Category Archives: special needs

How we Communicate – A Podcast

*This was an assignment for English Composition to create a podcast about something you care about.  This is mine after many revisions and incorporating notes from my teacher.  A written transcript of the podcast is below, but if you can, listen first!


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Emma – 2016  Photograph by Pete Thompson

This voice?  The one that you’re hearing read these words?  Yeah, that one.  It isn’t my voice.  It’s my mom’s.  You’re probably wondering why a teenage girl would want her mom to read what she’s written.  In my case, it’s because I can’t read what I write out loud.  There’s not a direct line between my brain and my mouth.  It’s more like an elaborate maze.  I can’t speak so people understand what I mean.  If asked a question, my mouth says things that do not answer the question.  My brain doesn’t think in words the way most people’s do.  Names of things and people get handed to me instead of the words that would make sense to the person questioning me.  Sometimes I blurt out whole sentences from another time in my life.  (Emma’s voice) “I bounce a balloon to Emma.  I bounce it back to me.”  They may be images that remind me of the person I’m with or where I am, or words I’ve heard spoken by others, things that get caught in my mind, or unrelated scripts, but that convey the exact emotion I’m feeling.  (Emma’s voice) “No more ice skating.  Ice skating’s gone.”  In any case, what I manage to say usually baffles the people I am speaking to, causing them to misunderstand me.  Not being able to speak what’s in my heart so that others are able to understand can be challenging, but I can type things that I cannot reliably say.  There are computer generated voices that say the letters as I type them and sound like this – (Computerized young girl’s voice) “I am your friendly computerized female voice.  I sound like I’m maybe five years old.”  (Another computerized young girl’s voice) “Or I can sound like this and pretend I’m British.  But yeah, it’s just not me.”  Or I can sound like this.  Okay it’s not my voice, but with some direction, Mom sounds better than a computer.

Imagine for a minute that you can’t talk to people in any way that makes sense to them or you.  Imagine if every time you opened your mouth to speak other words tumbled out.  If you are like me, you might get used to not answering people’s questions or being able to stay on topic.  So what would you do?  How would you interact with people?  Would you ignore their questions?  Pretend you didn’t hear them?  How would you express yourself?  Maybe you would try to connect with scripts you’ve memorized, things you’ve heard other people say in similar situations or maybe you’d find non-word based ways to communicate.  That’s what I do.

(Sound of footsteps, people talking and the subway)

Sound is everywhere.  I don’t have a filtering system marking one particular sound as more important than another.  Can you understand what I’m saying right now?  Mom had to raise the volume of her voice so that you could hear it above all the other noise.  My brain doesn’t do that.  It hears all sounds equally and does not discriminate.  But some people’s voices are not as dramatic to my ear as the honking of a horn.  I love the sound of honking horns.  (Horns honking and traffic noise)  Favoring some sounds dilutes others, but music has the best sounds of all.  (Body Knows Best – Anya Marina)

Music is my first language.  It is a friend who loves me unconditionally.  It’s there when I need it and does not shed a tear if ignored for some time.  Music is a positive force as it stands by my side.  I like hearing the same melodies repeated and did so even when I was very young.  It’s been a comfort to me as long as I can remember.  Music grounds me and plays a huge role in seeking my creativity as it allows me to perform as I choose to.  It’s a way to communicate; it gives me hope, tells me I am not alone and inspires me to create.  Though people respond differently to music, I believe there are always emotions involved. Music has the ability to transform my fearsome thoughts laden with anxiety and stress.  (Music fades out)  It calms me and this has been the case throughout my life.  When singing lyrics I stumble and have trouble articulating the words, (Lose Yourself – Eminem) but I can remember the sounds I hear and recreate them with my voice.  When I sing I am not apart from, but instead am part of.

Music can be both private and public, but it needs to be loud.  (Music gets louder) No one composes music in a whisper.  My body needs to feel the beat so that I can be consumed by it.  (Volume increases steadily and then fades)  When that happens I become part of the music, like another instrument or an extension of it.  I jump and dance and move.  My arms swing or are raised up and my head bops, my whole body keeps time to the beat.  I’m transported to another reality and it is in this alternate reality that I am most happy and comfortable.

At home my need for high volume can cause problems because the members of my family have differing sensory needs that come in direct conflict with mine.  (Heartless – Kanye WestMy older brother has to have music as background, while I perform alongside, so it makes sense for mine to be public and his to be private.

(Emma’s brother)  “Yeah I think it’s totally fair that you’re able to use the living room.  It’s not like you play bad music or anything.  If you played music I didn’t really like, I’ll just shut the door and go in my room and hang out.”

My mom and dad both work at home and need quiet in order to concentrate.  I am told to wear headphones, which encumber my movement and dilute my experience.  My family has worked out a solution that allows me to commandeer the living room in the evening.  For several hours I am blissfully able to indulge my love of loud music and dancing while my brother stays in his room or hangs out with my parents in theirs.

Until about a year ago I didn’t know the joy of creating music.  Until then I was an audience member, but not a participant.  My parents encouraged my love of music and hired teachers to help me expand my interests.  Guitar is beautiful to listen to, but it is difficult for my fingers to recreate the sounds flowing through my mind.  Piano is also hard and requires dedication and lots of practice, but I think it’s a better fit for me.  Singing is easy and my lack of inhibitions, great sense of tone and ability to mimic sounds I hear makes it the best choice of all.   Eliot is my piano teacher and Karen is my singing coach.  Eliot came first.

(Eliot) “Emma has a great ear.  She can learn to sing new melodies really quickly and accurately.  Recently she’s been listening to the car horns outside and sings their exact pitch.  Emma is a fun, expressive and creative singer/performer.  She brings a lot of life, passion and feel to the material.”

Karen came next.

(Karen) “Emma has really great pitch control.  She knows exactly how the melodies go whether she knows the words or not and she makes it a real point to study each specific thing that happens in the song and can honor each thing in the song by movement and she can also emulate the sound really well as far as consonants and vowels.”  

(Gimme Resurrection – Anya MarinaKaren and I have great fun together.  I feel at ease in her presence, which is important when you are learning new things and trying to be creative.

Eliot and Karen have taught me to be patient with myself.  From them I have learned how hard it is to become masterful and yet I’ve decided it’s better to love the process of learning as much as the final product.  Communicating isn’t just talking, it’s developing a connection with another.  Music connects us all.  I wrote these lyrics and composed this melody, so this voice?  Yeah, this one’s mine.

Emma sings Over and Coming
Eliot Krimsky on keyboard

The girl’s going in the bed
the girl is going inside
the girl is going outside.

Who is this girl I see?
Who is that girl I see?
Watch careful-ee-ee-ey
Listen to me-ee-ee

Over and coming and over and coming,
over and coming and over and coming

Go, go, go,
go, go, go,
go, go, go, go

Go, go, go,
go, go, go,
go, go, go, go

Find a way
to seize the day
Dare to be the leading girl!

The girl walks out the door
the girl walks in the door
the girl is a teenager.

I am the girl you see,
I am this girl you see,
Do you believe in me?
Please do believe in me.

I’m ready to fly if you let me,
I’ll go
Turn up the music and
just don’t say no.

Starting and going and starting and going
starting and going and starting and going
Starting and going

Do, do, do, do, do, do….

“Splinter Skills” and Other Words We Use

When Em was not yet three years old we received her diagnosis and began the long trek through, what appeared to us at the time to be, the treacherous terrain of autism.  All the things we admired, her various abilities, all those things I had identified as wonderfully “Emma” were now reduced to a single word “autism.”  I remember bragging about the fact that Emma, at the age of 18 months had taught herself how to pump her legs on a big kid’s swing, only to be told after her diagnosis that “kids with autism will often display splinter skills.” When I then commented that my daughter was extremely independent it was said that her autism caused her to shun other children and people, thus reducing her independence to nothing more than, yet another example of, her autism.

After awhile I felt I didn’t know who my daughter was, other than “autistic”.  That word seemed to so thoroughly obscure her in the minds of so many experts and people in the know.  Autism, it seemed, meant lacking and less than and not capable.   Whenever my daughter displayed things that could not be neatly placed in the deficit box, it was tossed into the “splinter skills” box.  It seemed no matter what she did it was viewed as “deficient” even when it wasn’t.  I remember feeling I finally understood what people meant when they talked about their child being imprisoned or all those awful images that abound of children silently, sadly, standing behind impenetrable walls of glass or behind bars of steel,  their small hands gripping the cold metal as they silently watch the world go by.  All of this, the words and images, showing us, telling us what we could and should expect were like seeing train tracks descending into hell.  Who knew it would take me eight years to understand that so many of those impenetrable walls of glass were constructs made by us.

If we did the same thing to those who are born without Autism, if we talked about our non-Autistic neurology as a deficit and identified all the ways in which it would cause us problems and difficulty, would we not despair when our non-autistic child was born as well?  Take your own life as an example and imagine that when you were born you were seen as a great disappointment.  Think about how each time you did something well it was dismissed as a “splinter skill” and was seen as yet another example of all that was “wrong” with you.  Think about what it would do to your self-esteem if your interests and passions were spoken of as “obsessions” or actively undermined and limited because they were seen as “unhealthy”.  It’s a double standard we have.  We non Autistics are praised, admired, given awards and accolades for our passions and obsessive interests.  People describe us as “driven”, “ambitious” or any number of other words used to describe the things that interest us.  But think if instead we were denigrated, ridiculed and scolded.  What does that do to a person?

The way we speak of and about our children, the way we think about their neurology, the way we attempt to “help” them “fit in”, these are the things I hope will change because it is not helping us parent our children, who need our help, it is not helping educators teach our children, who need to be taught, but mostly it is not helping our children be all that they can be.   My husband once said, “People spend all their time and energy trying to teach their Autistic kids to be something they’re not, when they should be spending all their time teaching their kids to be all they can be.”

Emma’s favorite work of art “Railroad Nostalgia” at the Scope Show in NYC.

Train tracks

Embracing Change

When Em turned two, I said, “I’d give a limb to have her ask for something.”

When Em was three, I said, “If only she could tell me what was wrong.”

When Em was four, I said,  “If only she was able to understand.”

When Em was five, I said, “If only she would sleep through the night.”

When Em was six, I said, “If only she would learn to use the bathroom during the night too.”

When Em was seven, I said, “If only I understood what she was thinking.”

When Em was eight, I said, “I just want her to be safe.”

When Em was nine, I said, “I want her to have choices in her life.”

When Em was ten, I said, “I think I’m beginning to understand.”

When Em turned eleven, I said, “Thank you.  Just thank you.”

Things continue to change.  We adjust.  I continue to change and my life gets bigger and fuller.  Em continues to change and her life gets bigger and fuller.  I didn’t fully appreciate or understand this when Em was first diagnosed, but I do now.

Everything changes.  I’m learning to embrace it.


Dreams of a New World…

Moral dilemmas continue to plague…  I have never seen myself as one of those mothers who poured all of her competitive spirit into shamelessly promoting her child.  A kind of stage mom gone rogue, using her kid’s exuberant charm and/or talents to gain recognition from thousands of strangers.  A kind of warped narcissistic mirror of neediness, an adult version of a child’s plea, Look at me!  Look at me!  Yet, in light of recent events with parents blogging about their children, posting photos, using their real names, telling excruciatingly personal stories, many not kind or endearing, while supposedly illuminating their child’s and their struggles for all the world to read, judge and comment on as a way to advocate for better services, it’s impossible for me not to reflect on what exactly am I doing here and how is what I’m doing so dissimilar?

I began this blog as a record, of what I hoped and expected would be, Em’s progress after a series of radical stem cell treatments.  I didn’t think or expect this would be read by anyone other than family and friends and those who might be thinking of embarking on similar radical treatments to “cure” their Autistic child.  At the time, April 2010, I wasn’t thinking ahead, I didn’t consider the broader implications, I thought of this space, this blank page, as a place I could come to record what I saw and hoped for, while believing that whatever it was, it would be “miraculous”.

What I didn’t know, couldn’t have known, was that the miracle that occurred ended up having nothing to do with stem cell treatments or any other treatment or therapy.  The miracle has been my own evolution, a kind of 180 degree turn from where I once was in my thinking, in my attitude and in my expectations about autism and what it means to be autistic.  And while there is no doubt that my daughter continues to make wonderful, steady progress, it is not as the result of various remedies and treatments we embarked upon, but rather as a direct result of NOT engaging in those various so-called “therapies”.   What harm we may have done to our daughter because of those treatments, bio-medical and otherwise, is something we will never know, but must live with the uncertainty for the rest of our lives.  

So why write about all of this?  Does the world really need another parent blog about their kid?  Probably not.  However, and here is where things get muddy for me, every time I think about ending this blog, every time I think I can’t keep doing this, it’s not right, it’s not fair to my daughter, it’s not for me to write about her, it’s not for me to broadcast what she says and/or does, it’s not for me to post photos of her, these are not my truths, they are hers to tell if and when she can, every time I think along these lines I wonder if I would have done things differently had I read a blog of someone’s journey that was similar to mine?  Would I have still gone to such drastic lengths?

Is it possible a child’s life might be made just a little easier because of something I write or say here?  Is that just ridiculously grandiose to even think in these terms?  And yet, I have to go back to my own history of having an eating disorder for more than 2o years and the help I was given from hearing others candid, uncensored stories of hope and recovery.  Those stories that resonated were the ones I clung to so desperately during those first painful and terrifying years as I tried to change my life.  Years when making it through a single day without binging and puking was considered a “good” day.  I needed those stories.  Had those people NOT told them I doubt very much I would have gotten through.  I don’t mean that to sound self-congratulatory, it’s actually the opposite, I could not have gotten to where I am without all those people, all those stories, all those people who reached out to me and said, “it’s okay, you can do this.  Here’s my number, give me a call if you’re in trouble.”  I learned to lean on people, I learned that I didn’t have all the answers, I learned that there were more things I couldn’t control than I could.  I learned what it meant to accept what is, the here and now.  I learned about being present and that I hold my breath when I’m fearful and I learned that I wasn’t alone.

So in the end, this blog is no longer a document of “my daughter’s journey through a childhood of autism” as I once described it.  This blog is a document of my journey as a parent and as a human being and how autism has changed my views.  It is a far more beautiful and complex world than I ever imagined or dreamed possible.  It is a world that is evolving, far too slowly for my taste, but I have seen glimmers of what is possible.  A world where we do not segregate, where ALL people are treated as equals, not just as an idea, but in reality, a world where everyone is fortunate enough to have an Autistic person in their life.  A world where autism is no longer feared, but is embraced.


Finding That Sticky, Messy Area Between Perfection and Despair

“Compare Emma to Emma.  Don’t ever compare her to another child.”  This was said to me years ago by someone whose name and face elude me.  I was reminded of their suggestion this morning as I rode the subway to my studio and read the chapter by Lucy Blackman from Douglas Biklen’s terrific, must-read book, Autism and the Myth of the Person Alone  – “That is  best illustrated by asking each reader to describe the cultural or emotional characteristics of their own sex, whether man or woman, without any reference to the opposite, not even by implication, as if you were completely unaware that there is another set of options available.”

As the subway careened along beneath the streets of Manhattan, I reflected on this idea of not comparing Emma to anyone else or even to an abstract idea of anyone else.  What if I didn’t compare her at all?   “…without any reference to the opposite, not even by implication…”  What if I saw Emma purely as Emma?  “ if you were completely unaware that there is another set of options available.”  What if I pushed out of my mind all those evaluations, the reams of “reports” the specialist’s conclusions, the pages and pages of “information” gathered over the last eight years?  What if all of it, every last word was meaningless?  What if I emptied our file cabinet of all that and started anew?

We live in a culture of comparing.  We look to our neighbor and envy their garden or, as happens in Manhattan, how many square feet their apartment is. We salivate over other’s imagined life, we covet that which we do not have and may never have, we pore over the lugubrious details of fallen celebrities and the train wreck of their lives, we gawk at the photos of dimpled hips, bellies, thighs occupying pages upon pages in magazines we may never purchase while in line at the supermarket, relieved that we are not the only ones whose bodies are not the chiseled, polished, perfection obtained through that impossible combination of genetics and a willingness to give over hours of our lives to a gym.  Yet we still feel embarrassment and shame when we go to the beach and uncover ourselves.

I spent a great many years perfecting just this sort of thinking.  I spent far too many years feeling alternately “less than” and “better than”.  Oddly there was equal measure of shame in both and yet I couldn’t figure out how to extricate myself.  It was one or the other, that sticky, messy area between those two points was much harder to occupy.  But it is that area I long to find my place in.  It is exactly that middle ground I now find myself reaching for.  “…as if you were completely unaware that there is another set of options available.”  That is what I strive for, when I think about and interact with Emma, but also in every area of my life.

“Compare and despair” is something I have heard people say.  I can illustrate this saying with countless examples from my life and yet, even now, knowing what I know, the temptation to compare is seductive.  How does it serve me?  This is the question I know to ask.  And I have the answer to this.  It doesn’t, but it is a habit.  Thankfully I am learning to stop myself when I catch myself comparing.  What I am coming to realize is, comparing is my knee jerk response to stress.  It is where I go when I’m tired.  It’s my default setting for when I’m overwhelmed, hungry, sad or just confused.  Repetition is how we acquire skill.  Repetition is how we undo learned behavior.  When I compare Emma to Emma I see tremendous progress, I see possibilities, I see limitlessness, I see the beauty in the small steps taken, I see a kind of poetry in her growth.  Challenge becomes subjective, goals are no longer solid lines but instead shimmery bands of light, something one moves in and out of, no longer a mountain to climb, but rather a place to visit and then move on.

How do I stop comparing my child?  By seeing her through a lens of wonder and curiosity.  When I am able to accomplish this, I have found true bliss.  A blissfulness Emma innately occupies and patiently awaits me.

Emma running through sprinklers outside the Museum of Natural History

A First Day And Life Continues..

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”

Anxiety, Fear and The Buddha

Emma’s new school begins Thursday.  I’m grateful for this because the pulling sensation in my stomach coupled with the constriction in my chest is increasing with each passing day.  As awful as that feels, it’s a familiar feeling, one I know to identify as anxiety and it feels better than the feeling of fear AND anxiety I’m going to feel Thursday morning when Emma looks at me with abject terror and says, “Please Mommy.  I don’t want to go to new school.  We go together.  You and me together.”

When I explain to Emma, as I have every day for the past two weeks, that I will be with her, when I explain that I am going to go into her classroom with her to meet her teachers for the first time, because the school has not returned any of my phone calls or emails since we returned from Colorado, when they explain how busy they’ve been, when they say that the assistant principal did, after all, reach out to me and whose name, phone number and email address I scribbled on a piece of paper because I was in Jerusalem at the time and cannot find that scrap of paper, I will nod my head.

I will hand someone the letter I’ve written about Emma so they can better help her and understand what she needs.  The letter that Emma would not participate in writing with me, but instead wandered off, insisting that she be able to watch the Hubble Imax theatre movie in our bedroom instead.  I will thrust that letter into her teacher’s hands and hope she will get around to reading it.  None of this is happening the way I envisioned it.  None of my plans, while in Colorado have been put into action because the school was closed, not a soul was around by the time we returned to the city.  So I will make some utterance of understanding, just as I did two minutes ago when I finally got through to the Office of Public Transportation who was unaware Emma was attending a new school, which means there will not be a bus for her until this gets straightened out.  It will require a dozen more phone calls to her new school who hasn’t picked up their phone, a dozen more messages like the one I left this morning will be left, and finally I will physically go to the school and find someone to speak to face to face because leaving endless messages on various extensions is an exercise in futility.   I know this.

In between writing this post I will pick up the phone and call several more times, just in case, just on the off-chance an actual human being will pick up and miraculously connect me to someone who knows that Emma is enrolled in their school and will be kind enough and compassionate enough to understand how big a deal this is for her.   Someone who will understand the enormity of this next step in Emma’s life.  Someone who will hear me when I say she is anxious.  Someone who will not judge me for wanting to ease Emma into her new school and will be kind to both Emma and me when we arrive.  Someone who will agree to work with me in these next few days or weeks, or however long it might take before that anxiety, that terror subsides.  Someone who will honor those feelings and not dismiss them.  And in the meantime while I try desperately to find that person who may not exist, I can, at the very least, be that person for my daughter.

I am walking that precarious fine line of honoring her feelings, while not changing the subject or saying anything that might encourage more fear and anxiety.  Identifying my own feelings, helps me in keeping my own overwhelm at bay, so that I might better help Em manage her own.  I try to reassure Emma, but not promise things I cannot know or keep.  This requires finesse, calm, tact, a level head, the knowledge of when to remain quiet and when to speak, this requires things I do not possess, but am trying to learn.

“I don’t want to go to a new school,” Emma said again yesterday.

“It’s scary to go somewhere new,” I answered as she put her head on my shoulder.

Em nodded,  “I don’t like the new school.  I’m scared, Mommy.”

“New things can be scary, Emmy.  But on Thursday I’m going to go with you.  I’m going to meet your new teachers with you.  And then when you are safe, I’m going to go for just a little while and then I’ll come back and we’ll go somewhere together.  Somewhere fun.  Where would you like to go?”

“Mommy will be right back.”

“That’s right.  Where would you like to go after your first day of school?”

I want to go to the big carousel and the zoo,” Emma said.

“Okay.  That’s what we’ll do then,” I promised.  I’ve cleared my calendar for both Thursday and Friday.  I am planning on hanging around the vicinity of her new school, I will be there to pick her up, I will go with her in the morning, I will photograph her bus driver and the bus, her teachers, her classroom, her classmates.  I will go over these photographs with her on the weekend.  It will take what it takes.  I can’t remove her fears, but I can try to ease them.

Over the weekend I took Em shopping for a new dress to wear to school.  We didn’t find one, but we did find some other things for her to wear.  On the way to the store Emma stopped in front of a shop window and said, “Look!  It’s a Buddha.  It’s a wonderful Buddha!”

And in that moment we were both happy.

Emma’s New String And A New School

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

Be Honest And Why That Often Hurts

Every morning I sit down to write a post for Emma’s Hope Book on this computer in my studio and look at the traffic speeding to and from Manhattan on the 59th Street bridge.  Sometimes I already know what I want to write about.  Often  I thought of something the night before, or if Emma did something I feel compelled to write about, I do.  But there are other mornings when I have a number of things I want to write about, but none seem ready to be put on the page.

Be honest.  I repeat to myself each morning before I begin.  But there are some mornings I don’t want to be honest, because honesty can be painful.  Some mornings I just want to write some other version of my life, a fantasy that doesn’t require me to dig down into the darkness.

Cover of "Boy Alone: A Brother's Memoir"

Cover of Boy Alone: A Brother’s Memoir

I read a memoir a few years ago, by Karl Greenfeld called A Boy Alone.  Karl’s father, Josh Greenfeld wrote a memoir about his son, Karl’s brother, A Child Called Noah  several decades earlier.  I didn’t love Josh’s memoir, but I was enthralled with Karl’s as he writes beautifully.

(Spoiler alert – do not read the next 2 paragraphs if you have any intention of reading A Boy Alone as I am going to give away the entire ending.)

Toward the end of the book, Karl writes about moving away from home and how over time, as he struggled with addiction and other challenges, his autistic brother seemed to find himself and eventually could not only live independently, but seemed to have a maturity and wisdom Karl was still struggling to obtain.  As I read these pages I began to read more quickly, trying to figure out how this could have happened, what therapy helped Noah, what exactly was it that propelled him forward, allowing him to become verbal and freeing him from a  life of institutionalization?  But Karl was not forthcoming with this information.

Karl ends the book with doctor’s reports from the various institutions Noah was placed in. The reports are horrifying, the drugs, the restraints, the “therapies,” sadly commonplace in such places are all documented in the dry, hollow tone of doctors and caregivers who have completely separated themselves from the human beings they are administering to.  As I read, I began to reluctantly realize that these reports were the truth, not the previous pages of Noah’s miraculous progress from institution to independence and I wept.  I hated the book.  I felt betrayed.  I felt manipulated.  That book, A Boy Alone has haunted me ever since.  Even now years later I cry when I think of it.

I’m nine-years old home sick with the flu.  My father comes in to read me a story before he goes out horseback riding.  He says to me before he leaves, “I’ll finish the story when I come home.”

“When will that be?” I ask him, turning away from the bright sunlight pouring in through my bedroom window.  

“Soon,” he promises.

Only he never came back to finish that story.  That afternoon he went over a jump with his horse where there was a low hanging tree branch from a massive oak.  His horse cleared the jump, but in doing so my father was crushed by that branch.  He fell to the ground, his back broken.  Paramedics were called and sped him off to the hospital where it was determined he might not live.  Later we were informed he would likely be paralyzed for the rest of his life.  He spent many months in the hospital.  Every few weeks the doctors would gravely give us their opinions.  They were almost always wrong.  Eventually he came home, over the years of physical therapy, exercises, sheer force of will and determination, my father was able to walk and even got back on a horse.   But the nerve damage to his legs was extensive and as he aged he lost more and more of his strength.  The last decade of his life was spent in a wheelchair. 

I write this because, though I didn’t know it at the time, his accident changed everything and has informed my life today in ways I could not have imagined.  I saw how people treated him.  I saw how a wheelchair had the power to change the conversation.  Often it was a subtle change, but there was no mistaking the looks of pity, the attempts to disguise their discomfort, the undisguised irritation strangers would display if his wheelchair caused them to slow down, move out of the way or forced them to accommodate him.  My father was a proud man, athletic, capable and prided himself in never depending on anyone for anything.  And yet, in the end he had to and he hated it.

Be honest.

I am.

A Fantasy For Autistics

Last Monday Emma was profiled in A Slice of Life Series that the blog Thinking Person’s Guide to Autism has been running through the month of April.  This is the blog I wish had been around when Emma was first diagnosed, but that I am so grateful exists NOW, because it is by and for Autists and those who care for them.  Almost all the comments were from Autists who have blogs of their own and I recognized almost every single one of their names.  One of the people who reached out, Savannah, has a terrific blog called, Cracked Mirror in Shalott.  After she commented on this blog, I went to hers and read a powerful post, entitled Payment about teaching life skills to young Autistics.  The first sentence of her post is:  “I don’t want younger Autistics to learn some of the skills I have- or, at least, not the way I learned them.”

I will do her writing a disservice by trying to relate it here, so I urge anyone reading this to go to the link I’ve provided.  I commented on her post and inquired if it would be okay to ask for any thoughts on how to help Emma learn to wash and rinse her hair, which we’ve been working on for close to a year now, with on-again-off-again success.  In reply I received not only a lovely and thoughtful response from Savannah, but another from someone else, who had some terrific suggestions and also has a blog, Chavisory.  As I pondered the various responses I began to formulate a fantasy.  A fantasy of what I would love to see, what I hope I will live long enough to see, a vision of a different sort of world.  A world in which adult Autists were mentoring and helping younger Autists.  A world where adult Autists were involved in every aspect of society, education, government, policy.  I imagined a world where Autistic writers had columns in every major newszine, newspaper and magazine.  A world in which every single school had Autists teaching, devising curriculum, training and teaching neurotypicals how to best teach children on the spectrum and as I allowed this fantasy to develop I felt a surge of energy and excitement.  I literally felt like jumping up and down.  When Richard appeared, bleary-eyed and slowly reached for his cereal bowl, unable to contain my excitement any longer, I blurted out, “Can I tell you about my dream?”

“Can you tell me?” Richard asked, with a dazed expression.

“Yes.  Can I tell you?”  Unable to hold back any longer I launched into my fantasy, while Richard was still forming the words – “Yes, of course. Tell me.”

“Can you imagine what it would be like if adult Autists were writing books, teaching us, training us parents how we could best help our Autistic kids?  Can you imagine how amazing that would be?  Can you imagine how helpful that would be?  Autists have insights that we can’t possibly have, they understand better than anyone the various sensory issues, delays in motor skills that might be making it harder for children like Emma to learn how to do some of these things.  Can you imagine?  Can you imagine a world where schools were created and run for and by Autistics?”

And before Richard could reply I kept going. I was on a roll.  The excitement I felt just thinking about all of this was so great I couldn’t sit down.

“Think about it.  It would be so amazing, unlike anything we’ve ever experienced.”

As I considered this fantasy world I felt the stirrings of determination.  Why does this have to remain a fantasy?  Why can’t this be a reality?  What would have to happen for this to go from far-fetched fantasy to reality?   I’m sure others have had this thought.   What would need to happen?  What are the next steps?  I bet others have begun to make this a reality and if so, I’d love to know about them.


For my latest piece in the Huffington Post – Running With Mermaids

To read Emma’s profile in The Thinking Person’s Guide to Autism, click ‘here.’

The Evolution of a Perception

As I wrote yesterday’s post about Emma’s progress in the past year, I realized how much my perceptions and views have changed since beginning this blog.  When Emma was first diagnosed I cycled through a series of emotions fairly quickly.  Some, like guilt, grief and anger hit me with a violence that took my breath away.  Others ebb and flow, while still others, like acceptance, came more gradually, but all of these things continue to change.  My ideas about autism, what that means to Emma and to us have changed.  I no longer believe there is a neuro-typical child named Emma hidden beneath guaze like layers of autism.  A child who, if we could just find the magic thing that would remove the autism, would emerge, intact, speaking in beautifully, articulate sentences, a child who would suddenly converse with us as though all these years had been silent practice for her grand debut.  I do not believe we can extricate Emma from her autism.

I have gone from thinking it was wrong for me to slap such a potent label on her, that it was kinder, gentler, more empathic to say – my daughter has autism – than to use, the more blunt and direct, “she is autistic,” to the question I now find myself continually asking – what would she say, if she could?   I don’t know.  Until she tells me, I cannot know.  But I won’t stop trying to find out.

In my search to understand Emma, I have found voices, and there are dozens and dozens of them out there, autists who, now in their 20’s, 30’s, 40’s and 50’s have blogs where they articulate what many cannot say with spoken language.  These are the so called “high functioning” autists who can communicate, some not verbally, but who have found ways to communicate through typing and other forms of communication.  Their opinions, their voices, often poetic, at times angry, despairing, brutally honest, always insightful, are making themselves heard through their blogs.  Finding these sites has been akin to learning there is a vast alternate universe.  There is so much I did not know, do not know, but want to learn.  Over the course of the past eight years, with the sole intention of helping my daughter, I have done almost every single thing many speak out against.  I didn’t know.  I thought I was fighting for Emma.  I thought my focus on a “cure” was a good thing, the noble thing, the thing that would release her from the bondage of autism.  It never occurred to me that my focus could be perceived as a kind of bondage in and of itself.  By the way, I am not beating myself up over this, or more accurately am trying hard not to, but am doing my best to listen and learn.

I know I’m wading into tricky territory here, with many differing opinions about “cures” and how that word is negatively perceived by those on the spectrum, and I don’t want to get into the semantics of it, only to suggest it is a dialogue that is important.  It is a dialogue I am trying to understand.  I want to understand.  One I hope I am coming to understand.

The abuse, the prejudice, the cruelty all of these austists have endured is staggering.  One of my favorite blogs, by the incredibly talented Julia Bascom, called Just Stimming is filled with such pain.  She writes so beautifully and with such honesty, I read her words and feel overwhelmingly grateful for her voice.  E. is another such voice with her blog, The Third Glance.  Then there’s Landon Bryce, who’s blog ThAutcast is peppered with youtube videos of himself talking.  Provocative,  passionate, he is always interesting and someone I would love to have a conversation with.  There is LOVE-NOS, a group blog with three authors sharing their views and thoughts, one of whom is Julia Bascom. Another group blog, Wrong Planet describes itself as – “a community designed for individuals (and parents/professionals of those) with Autism, Asperger’s Syndrome, ADHD, PDDs, and other neurological differences.”

The point is, these sites are educating me in ways I could not have imagined.

Someone named Kathryn commented on another blog:  “Here are two broad categories of parent attitudes about autism. (Others may exist, but these are common and pertinent.)

1. I want my autistic child to function the best he/she can, and will do anything I can to help him/her overcome the difficulties posed in his/her life by autism.

2. I want to have a normal child and will do anything to get rid of this autistic child’s autism, because then I’ll have a normal child again.”

I aspire to be the parent described in #1.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

Emma during gymnastics last Sunday

A Blessing or A Curse

I rewrote and submitted my Waging War post for the Huffington Post.  They changed some of the tenses (I hate when they do that) and published it last night – click here.  Someone commented, “It is great that you come to the realizatio­n that you can accept your child for who she is. However, I know very few parents of autistic children who confuse their children with their children’s disorder — whether or not they wage a war against autism. Children are blessings, autism is a curse.”

That comment made me think about how difficult it has been, for me anyway, to separate Emma from her autism.   I have always loved my daughter.  I have not loved her autism.  Even now, that concept continues to evolve.  I accept that this is how things are, I accept that she has autism, I accept that because she has autism there are many, many things we must do to support and help her.  I accept that there are things that will take much, much longer for her to  learn and other things that she comes to with no trouble at all.  I accept that who she is has as much to do with the autism piece as it does the Emma piece, that in fact the two are not separate.

Any parent with a child on the spectrum has wondered what their child would have been like had they not had autism.  Would she still have near perfect pitch?  Would she still have an amazing memory, the sort of memory that remembers specific people, places and events when she was two years old?  What sorts of things would she like doing?  Presumably her favored activities: the carousel, the zoo, The American Natural History Museum and FAO Schwartz would have worn out their welcome by now.  Would she still fear dogs?  Would she be the sort of child who had many friends or just a few very close friends?  What classes would she excel in?  What subjects would captivate her?  Where does the autism end and Emma start?  Can we really do that?  Can we really separate the two?  Emma’s autism informs every aspect of her life.  And yes, she is a blessing.  Exactly as she is, with autism or without it.

Nic & Em at the Metropolitan Museum of Art

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

The Shower

Emma washed her hair this morning.  By herself.  With almost no input from me.  Emma is ten years old.  Emma has autism.   I used to think those few sentences would suffice.  Keep it short and sweet, age, diagnosis, what more needs to be said?  But I was wrong.  Most people who do not live with a child with autism have little or no idea how monumental something like washing her hair unaided is.  Okay, so I stood outside the shower and had to do a little coaching – “Lather the shampoo on the top of your head too, Em.  Good, now behind your ears, don’t miss the hair on the sides, just above your ears.  No, not like that, Em.  Like this.”  Then I demonstrated by pretending to shampoo my own hair, as she watched me and did her best to mimic my movements.

For the past four years, since Emma began preferring showers over baths, Richard or I have aided her in washing herself and her hair.  Richard’s swimsuit hangs in our bathroom, damp evidence of his continued support.  The few times I tried to let Emma wash her hair on her own, I regretted it. Once her hair dried, revealing large patches of unwashed and now even greasier hair, it was all too apparent that help was still required.  As with everything, it is not that Emma cannot eventually wash her own hair, it’s that it takes a great deal longer for her to learn.  Years, actually.  Many, many years.  “Maybe we should move to France,” I suggested one day after a particularly lengthy and difficult session trying to get Emma to rinse the shampoo out of her hair.  Richard looked at me quizzically.

“They don’t take bathing as seriously as we Americans do.”  (To all French people whom I have now possibly offended, forgive me for my blatant stereotyping.)


A bit later Nic announced that he too, would like to move to Paris.  When I inquired as to why he thought this was a good idea, he mentioned the museums, the great food, I’m pretty sure he even said something about their coffee being superior, a beverage he isn’t allowed to have.  But I knew his desire had more to do with the fact he doesn’t love showering either.

When Emma got out of the shower, she pulled a towel around her body.  Carefully she began to dry her feet, legs, stomach, arms, just as she has been coached to do for all these years.  “Em, you’re doing such a great job,” I said.

“Drying by myself,”  she said, sternly.  Then she corrected herself, “I’m doing it by myself.”

I nodded and smiled at her.

“Mommy, go away,” she said.

So I did.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

A Birthday Party

Emma does not get invited to many birthday parties.  In fact I can count on one hand the number of times she’s been invited to a birthday party in the last year.  Okay, make that one finger.  Don’t misunderstand me, there is no resentment here.  The children with whom Emma goes to school all have autism in varying degrees, food allergies are rampant, each kid has their own specific sensory issues, some have physical challenges as well, so for a parent to take on the idea, let alone put into action, the planning of a birthday party, is a major undertaking.  The other children Emma knows or has any contact with are either her cousins or friends from before her diagnosis and most of them are Nic’s age, not Emma’s.

So when my cousin invited her to her daughter’s birthday party, Emma was so excited, she talked about it for at least a week prior to the actual party, which was this past Saturday afternoon.  Richard was sick with some nasty bronchial sounding cold, lending him a – come hither – husky quality, opted to stay home and not risk infecting all the children and their families with his germ riddled body.  (TMI – too much information – as Nic would say.)  Emma insisted on wearing a black shirt, embellished with little beads at the neckline, leggings and a plaid skirt, all but the leggings were a size too small, despite my suggesting she wear something a size larger.  “No!  Please!  I want to wear this one!” She pleaded.

When we arrived, Emma said hello to all her cousins and though I kept my eye on her the entire time, she did very well.  There were some 30 children aged 5 – 12, mostly girls and mostly Emma’s age – 10.  The family had hired a couple of clowns who did an hour long routine, with gags, pratfalls and “magic” such as the man pretending to eat a piece of kleenex while the woman demands that he spit it out, only to have her pull the kleenex from his mouth, but instead of kleenex coming out, yards of multi-colored tissue pour forth, leaving one to wonder how he managed to get all of that in his mouth in the first place.  An hour is a long time for a child who may or may not understand all of what is being said and done, to sit.  But sit she did.  Right in the front with all the other girls, watching and though I don’t think she laughed at any of their antics, she did seem intrigued.

After the show ended, the other children ran around playing chase while Emma played with the string of a balloon.  When it was time for us to leave, Emma put on her shoes and coat and said, “We went to Gaby’s birthday party at Gaby’s house.”  And by the time the elevator let us out onto the street, Emma looked up at me and said, “We went to Gaby’s house a long time ago.”

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

Emma’s Brother

Emma’s school has a sibling group that meets every other week.  The neuro-typical siblings meet for an hour, eat pizza, play games in the gym and generally just hang out for an hour or at least I think that’s what they do.  Nic, who turns twelve in another few months, has no interest in going, so we have never been.  For the past few weeks though, I’ve been encouraging him to give it a try.

“Why not?” I asked him the other day.

“Why would I want to go to her school and be with a bunch of kids I don’t know?” Nic looked at me and then asked,  “Will she be there?”

“No.  That’s kind of the point.  It’s time you can spend without her.”

“Why would I want to do that?  I’d rather go if she was going to be there.”

“Well, you might meet some other kids and find you liked them.  You might make some new friends.”

“But Mom, I have all the friends I need right now.  I don’t need any more friends.”

“What about the idea that you might meet some kids you like who also have a sibling with autism?”

Nic stared at me, seemingly dumbfounded.  “Why?”  he finally asked.

“Well, so you won’t feel so alone.  Because it might help to feel you could talk about it with another kid, because, maybe…”

“Mom,” Nic cut me off.  “I don’t feel alone and I can talk with you and Dad if I feel like it.”

“Don’t you ever want to talk to someone else though?”


When Nic was in Kindergarten, less than a year after we received Emma’s diagnosis, we took him to a child psychologist where he did “play therapy.”  This was in the days when he was drawing lots of bloody monsters who ate people.  He would spend hours on a drawing or painting, which he would then present to us proudly.  Red, one of his favorite colors, predominated as the depiction of blood was a prevalent theme.  Blood, carnage, gore, guts, people being decapitated and eviscerated, huge, frightening monsters almost always with severed limbs hanging from their mouths, were common subjects in his earlier work.  Then he went through a phase of depicting serial killers, chain saw murderers and any manner of brutal and horrifying creatures.  Richard would proudly shake his head and mutter something about how the apple didn’t fall far from the tree.  And it’s true, Richard and Nic share their love of horror and gore.  But when Nic’s second grade teacher called us to inquire if everything was all right at home because Nic’s graphic artistry was seen as being extreme, we had to have his psychologist speak with the school, assuring them that all was well.

A few years later when Nic’s homework load increased, he chose to stop going to the psychologist with the understanding that he could always go back.  However he has never wanted to.

Still, the sibling group seemed like a good idea, so I’ve been encouraging him to give it a try.

“It wouldn’t hurt to go just once.  You never know, you might find you like it,” I told him.

“Yeah, maybe,” Nic said, though it seemed like he was saying that so I’d stop pestering him more than because he thought it was a good idea.

“They’re having another one in two weeks.  Maybe you’ll feel like going to that one,” I suggested.

“Yeah, maybe.”

For more on our family’s journey through Emma’s childhood of autism, go to:   Emma’s Hope Book