Tag Archives: Judy Endow

A Documentary, Two Blogs and A YouTube Video

The following is a trailer for Spectrum:  A Documentary about Autism and Sensory Perception.  This is the documentary I cannot wait to see when it’s finished!  It features Nick Walker, Martial Artist, writer of the single best description I’ve ever read answering the question  “What is Autism?” and all around amazing guy and Judy Endow, a terrific writer, speaker, talented painter and sculptor and friend.  The third person featured is Tito Mukhopadhyay, eloquent poet, writer and son to the woman I am filled with gratitude for on a daily basis, Soma Mukhopadhyay, who taught me how to communicate with my daughter.


This is the first of two blogs you must know about, if you don’t already.  How to Talk to a Woman Whose Child is Dead the most recent post on Unstrange Mind.  It is so beautifully written by the multi-talented Sparrow Rose Jones, who also sells her fabulous art work in the form of t-shirts, stickers, hoodies.  Click this link Red Bubble to see and purchase Sparrow’s wonderful art work.

The second blog, We Are Like Your Child, is one I’ve been following since it was created.  It’s a group blog with a variety of people, mostly Autistic, who write about a wide range of topics.  A Checklist For Identifying Sources of Aggression is a great bullet point checklist everyone should read and Meltdown, Night Blooming Flowers: Sudden Skill Acquisition and Extreme Context Dependence,  Teaching Us to be Silent, and Please Don’t Rush Me are other examples of the kinds of posts you’ll find.

And finally I’m going to end by sharing again a video of the presentation Emma and I gave at CoNGO affiliated with the UN a month ago on World Autism Awareness Day, now captioned thanks to the beautiful and talented, Savannah Nicole Logsdon-Breakstone.  Thank you again Savannah!


Musings on Fear, Dehumanization and Other Light Topics Worthy of A Friday Morning…

I have always had an irrational fear of institutionalization.  Irrational because I have no “diagnosis” or valid reason that would make such a fear reality unless you count being high-strung, emotional and I’ve been told over the years, “too sensitive” but I don’t think people are ever actually institutionalized for that… or are they?

Maybe it was the stories I was told as a child about a couple of my relatives, now dead, who were institutionalized against their will by family members intent on getting them out of the way, or perhaps it was from all those months my father spent in the hospital clawing his way back to the living after a horse back riding accident that left him disabled for the remainder of his life, or maybe it was the books I read and was drawn to as a teenager.  Books detailing (supposedly) real lives lived such as Dibs in Search of Self, Sybil, The Three Faces Of Eve and Go Ask Alice.

Whatever the reason, I had and have a terror of being “put away”, locked up somewhere.  This fear includes hospitals, group homes, prison, any place that removes my ability to walk away when I choose, and places my care in the hands of others.  As a quick example of how much this fear permeates my life, I gave birth to both my children naturally and in birthing centers, not because I have an aversion to drugs, (I had a lively and deep attraction to drugs of all kinds during my teens and early twenties – I do NOT recommend this) or because I’m a granola-eating, Birkenstocks wearing vegan. (I’m not.  Not that there’s anything wrong with anyone who might fit that description.)   No, I gave birth naturally and in birthing centers because my fear of hospitals aka institutions is so great I begin to feel real panic even writing about it.

When I had to have a partial hysterectomy last winter I informed my surgeon I wished to be the first one in and assured him I would be going home that evening.  When he suggested I might want to stay overnight at the hospital, that even in the best of circumstances I would probably NOT be released to go home, I became so agitated and visibly upset he relented and said he would do all he could to get me home that night.  And sure enough, despite being so out of it I could barely put two words together, let alone a whole cohesive sentence and had a head the size of a watermelon from having been hung upside down for more than five hours, I managed to get myself upright.  My husband, using all his strength half carried, half dragged my useless, morphine infused body out of the hospital and into the relative safety of a taxi driven by a kind, middle eastern gentleman whose upper head was encased in white cloth aka a turban, that reminded me of medical bandages.  In my drugged state I kept imagining I saw blood pooling on the white cloth and had to open a window so as not to hyperventilate and throw up.  As the taxi careened along the streets of Manhattan, I allowed my body to slump against my poor, patient husband who was busy distracting himself with the latest New York Times Crossword puzzle.  Even so, all of this was well worth the effort as I made it home and into our bed by 10:00PM that night.  Panic attack thereby averted. *Whew*

When my daughter was diagnosed with autism, my fear of  institutions was the one fear, outstripped by any other, that brought me to my knees.  For years it was this vision, that horrifying gothic institution, dark and forbidding that I became convinced would be the inevitable conclusion of not my life, but hers once my husband and I died.  It was this looming image in my mind that made me hurl myself headlong into various remedies and treatments.  For years I felt sure that anything we could do to save her from such a bleak future was surely a worthy goal.  It just never occurred to me that what I thought was inevitable was not. And this is where I thank my Autistic friends for courageously sharing their stories with the world.  Because of them, their lives, their stories, I no longer believe this is my daughter’s inevitable future.

Judy Endow is a writer, a consultant, a mom, who conducts workshops on Autism related issues.  Judy is Autistic and spent several years in an institution as a teenager.  In her terrific book, Paper Words she discusses how she perceives the world by the movement and sounds of colors and writes,  “… please entertain the notion that a person who has an internally wired neurology to enable this, though a bit different from most, may not be any less intelligent, or indeed any less of a human being, than the typically wired folks, who are clearly in “The Majority” in the world-people world that we all inhabit.

As I read Judy’s powerful book I reflected on the nature of institutions, disability, aging and difference and how we humans tend to dehumanize those we believe to be weaker than ourselves, whether physically or mentally or both.   Until we can begin to embrace that which we do not understand or have experienced we cannot really know the harm we do, intentionally or not to those who must rely on others for understanding, accommodation and help.  Most of us, at some point in our life, will be dependent on another human being to have, at least some of, our needs met.  Let’s all hope we are fortunate enough to have someone who understands theirs is not a position of power, but a gift each of us can give to another, until it is our turn to receive it.

Em’s Self-Portrait – January, 2013


It’s My Birthday and I’ll Laugh if I Want To

Saturday was my birthday.  I’m 52.  Or as my twelve-year-old son said to his younger cousin last night, “Do you understand how old she is?”  A look of confusion lingered on his cousin’s face.  Then, apparently tiring of her lack of response, Nic said in a grave tone, “She’s fifty-two.” There was a moment of silence and then to be sure he’d left no room for error he added, “Fifty two years old.”   His cousin looked at me with raised eyebrows and what I imagined to be a new-found appreciation or maybe it was horror, it’s impossible to know what an eight year old, having been given this sort of news, might think.

I figure I’m at the halfway point, though my husband would say I’m being unrealistic as he fully intends to live… forever.  Yeah, you read that right.  As in eternity.  I’m not as optimistic.  However, I like the idea of having reached the halfway mark, forget that I felt I was at the halfway point last year and the year before and the year before that too…  But let’s just say I’m right, that would mean I’ve got another 52 years ahead of me.  And I don’t know about you, but I fully intend to make good use of them!  Because the first 35 or so I kind of made a mess of.  There’s good reason I have a 12-year-old and 10-year-old when many of my same age friends have children graduating from high school and college.  Don’t get me wrong, I’m grateful for my past, I’ve learned a great deal.  I just wouldn’t want to do any of it over again.  I really like being 52.  I like being where I now find myself.  But mostly I really like my life.  

Birthdays are a time of celebration, but more than anything they’re a milestone of how far we’ve come.  At least that’s how I like to think of them.  I’ve come far in 52 years, but this last year has been more significant than any other year to date.  It has been within the last year that I have completely changed how I see my daughter.  And that change has unexpectedly altered my view of the world and my life.  I don’t know that any other single thing has changed my thinking and views of life and the world as quickly, dramatically or completely.  There have certainly been milestones – getting help for my eating disorder, stopping my bulimia and anorexia and getting sober are two examples of significant change.  And while the actual stopping of an action happens in a single moment, real change occurs over many such moments, repeated over and over.  The larger changes that take place as a result of those repeated actions or inactions can take years to recognize.  It is, as they say, a slow recovery.

My introduction into the world Autistics inhabit and talk about, was swift, abrupt and in many ways, more life altering than anything I’ve ever experienced.   I am still reeling from the force with which this knowledge has transformed my life and the lives of my immediate family.  As a result, I have never been so happy.  I have never felt so hopeful.  I have never been so sure we are on the right path.  I have never enjoyed my family as much as I do now.  Most surprisingly, my happiness is not because Emma has become a “normal” child.  On the contrary, my happiness is, in large part, because she is not.  I view her with wonder, without judgement and an open mind.  I have learned to see her as neurologically different, not wrong or broken or in need of fixing.

I no longer speak of Emma as though she cannot hear me or understand me.  When she doesn’t answer or walks away when I’m talking to her I no longer assume she’s not interested in what I have to say.  I have learned to examine all of my assumptions.  I have learned to question everything, and I mean literally everything I think or think I know.  At my friend Ib’s urging I’ve begun reading Autism and the Myth of the Person Alone by Douglas Biklen.  This book, like so many that I’ve read in recent months, throws everything we neurotypicals think and say about autism and Autistics out the window.  Judy Endow, just posted a terrific piece entitled, Seeing Beyond My Autism Diagnosis.  She talks about the lens through which NTs view Autistics and writes:  “Stereotypical views of autism are based on the neurotypical (NT) assignment of “truth” as they look at us.”

One of the greatest gifts I’ve received this past year is the joy that has come with  questioning my “truth” when it comes to Emma.  In questioning it I have found my sense of humor.  It never entirely left me, more like it had been tamped down by stress and worry.  To laugh, to really feel the absurdity of situations that used to cause me tremendous upset and concern, to feel the carefree pleasure of being with my family and enjoying them…  this is the life I had always hoped for, but felt would never be mine.

Yeah.  I turned fifty-two on Saturday and I’ve never been happier.

The vanilla cake with raspberry icing Em and I made.  Nic and Emma decorated it by writing everyone’s name on it.  And yes, it was delicious!

Beautiful Em wearing one of her pretty dresses