Tag Archives: hope

Finding Hope ~ By Emma

“Finding Hope

It cannot be found in fear, anger or when overwhelmed.

Hope must be cared for. It has to be nurtured and fed yummy treats.  Hope needs love and trust to grow.

Many people give up on hope because they are told it is not realistic and they need to face reality.

But what is reality?

Do you prefer living with hope or without it?

I prefer to be hopeful.”

*This post was written by Emma, including the title and she chose the accompanying photograph.*

This photograph is what Emma chose to represent hope.  It is a pine cone resting atop her great grandfather's tombstone.

This photograph is what Emma chose to represent hope. It is a pine cone with a metal heart, resting atop her great grandfather’s tombstone.

Dare to Hope

Trigger Warning:  Parental despair

Five years ago I was in a bad, bad place.  Life felt unbearable.  The future loomed ahead shrouded in fear.  I could not imagine a life that was not bleak and filled with pain.  There were times when I could not bear the thought of another day.  There were times when I felt it was all too much.  People would make kind suggestions, but none of their words made sense to me.  I was sinking and saw no light.  I thought it was because of my specific circumstances.  I thought it was because I was the parent of a child who, I was told, couldn’t and didn’t understand most of what was said to her.  I was told she couldn’t comprehend this world.  I was told concepts like less and more, time, currency were beyond her ability to grasp.  I was told she was in her own world.  Despite all the years of therapy, there was no hope of her being mainstreamed, she did not make the sorts of leaps forward that other people’s children  had.

I blamed myself, I blamed my husband, I blamed the environment, I blamed my father, I blamed…  There were so many things to blame, but all it did was leave me bereft, empty, and in the middle of the night I would lie awake and cry.  I cried for myself, but I also cried for my child.  I loved my child.  I ached for my child and what seemed to be her inevitable future.  Along with the ache for what might have been, but was not, was the sad, dark, bleak despair that seeped into every aspect of my being.  I had fantasies of “heading north”.  I would smile weakly at my husband and joke, as I gathered my wallet and keys for a quick trip to buy milk at the grocery store, “I may not be back.”  Richard would grin and maybe we would even chuckle, but there was a part of me that wasn’t laughing.  There was a part of me that meant it.  I wanted to leave all that pain behind me.

There are those reading this who will cringe at this description.  There are those who will judge me and what I once felt.  There are those who will point out how self involved all of this sounds.  They will say, but how could you not see that what you were feeling was affecting your child?  There are parents who have children just like mine who never felt what I’ve described, who will not be able to understand or relate, who will read my words and shake their heads in horror.  I understand those responses too, because now, I catch myself feeling those feelings too.

My daughter has defied everyone’s expectations, including ours.  She is writing now.

She is writing such incredible words.  Sometimes a sentence may take her five minutes to construct.  I would cheerfully sit for thirty minutes or however long it takes for her to express herself.  Parents hear about my daughter and they say, “Ah, but my child isn’t like that.”  And so I ask, “How do you know?”  Parents say, “I know my kid.  He/she isn’t able to understand.”  I once believed that too.  And so again I ask, “How do you know?”  Parents say, “I know my child better than anyone.”  I once said this as well.  I thought I knew.  I believed what others told me.  She would laugh and then run full force into a cement wall, using her head as a batting ram.  We would get the dreaded phone calls from her school.  All those doctors, therapists and teachers, all those IEPs where she was described as unable, incapable – “Emma is unable to decipher simple text.”  “She does not know the value of a penny.”   “We will continue to work on sight words.”

Today my daughter is enlightening me.  If you want to know more, read “How We Got Here“.  Just the other day Emma wrote, in response to an incident at school, “You must remember how stressful it is not being able to tell anyone my silent screams of disconnection.”  Her school is now trying to learn RPM so that she can write with them too.

I cried when she wrote that.  I cried because I didn’t know until recently.  I cried for all the years when she had no way of telling us.  I cried for all the times I didn’t believe.  I cried for all the children who are just like her, right now, who cannot tell anyone about their silent screams.  I cried for every single parent who has ever felt the way I once did.  I cried for every single child of those parents and for all the times I heard about a child who was writing to communicate, just as my daughter is now, and how I didn’t believe she would be one of them.  I cried for all the times I heard about an Autistic child or adult and consoled myself by saying, “they are an anomaly.”  I didn’t dare hope that one day my daughter might be writing the things she now writes.  I didn’t dare hope, it hurt too much.

To the parents who feel overwhelmed with fear and despair  – I was once just like you.  Had I found a secret online group of parents feeling and talking the way I once did, I would have joined in an instant.  I’m grateful now that I didn’t find such a group because there’s another way.  I found another way, but not before making many, many more mistakes.  This blog documents a number of the mistakes I’ve made over the years, but not all of them.

If there’s one thing I want to say, it’s please, dare to hope.  Without that we are all lost.

*As always, I asked Emma for her permission to publish this post.

Wretches and Jabberers
Mark Utter’s I am in here

Ido Kedar’s book:  Ido in Autismland
Non-speaking Autistic blogs, many of which can be found on The Resources Page on this blog.

Emma getting ready to write

Emma getting ready to write

Outpouring of Words ~ By Emma Zurcher-Long

Three Haikus By Emma Zurcher-Long for #AutismPositivity2014

*Emma writes by typing on a bluetooth qwerty keyboard attached to her iPad.  For more about the way Emma communicates, read – How we Got Here

My writing blossoms
greeting welcoming smiles of
 encouragement gladly.


Green with envy you
strain to jump as far and high
daring to come close.


Lashing down, I run
to find shelter but there’s none,
laughter, roaming, I stay.


As the parent to a child who has been described as “verbal” but who was thought to be unable to understand much of what was said to her because she could not answer with spoken language questions such as, “How old are you?”  I will never be able to adequately describe what it is like to read my daughter’s words.

This blog began as a document of hope for our daughter, but it has evolved to become a message of hope to parents who feel the kind of despair and terror I once did.   As Emma wrote, “I am smarter than most people think.  So many kids are just like me.”

This post is dedicated to the Autism Positivity Flashblog going on all day today.

If you would like to submit to the flashblog, here is the submission form.

The Opposite of False Hope

Two days ago, Emma wrote her “Letter To the World” and yesterday while doing a throw-the-entire-house-into-disarray spring cleaning, I came upon a scrap of paper where I’d scrawled an enthusiastic note about something Emma had said.  I was so excited by her comment I had thought to write it down immediately lest I forget.  I even dated it.   The note read, 11/20/11 – Emma saw the next word we were about to work on and she said – “today we do “see”!  You see I did not realize then that Emma already knew how to read.  At the time, we had no idea of Emma’s capabilities.

Along with this note were books on counting, a whole book devoted to telling time, another that dealt with coins and the value of a penny, nickel, dime and quarter.  There were kindergarten level readers and books featuring simple addition and subtraction, along with multiplication and division flash cards that remained wrapped in their original cellophane wrapping, having never been opened because it was not believed Emma had mastered addition and subtraction yet, so how could we possibly expect her to move on to multiplication and division?

There have been other notes over the years, just like this one; little bits of paper where I jotted something down because I didn’t want to forget.  Usually noting things Emma said or did that proved to me that what people were saying about her were wrong, but often they were just moments, moments I wanted to record so that when I was feeling sad or discouraged I could see that there was progress, little glimmers of progress no matter how infinitesimal, they were undeniably there.

For those who have read what Emma is currently writing, all of this will seem a little strange.  You see, Emma has told us that she already could read more than two years ago when we were breaking everything down to its most basic, going over one word at a time, over and over, making sure she knew it before building on to the next and then the next.  All those years spent going over the concept of addition or subtraction, only to have her flounder when asked what 6+5 equaled.  Or when asked, “how do we spell “cat” she would remain silent or if asked to write the answer by hand or to type it, she could not and so we assumed she hadn’t learned the word yet.

We believed that because she could not read aloud a level one reader, or answer a question about the contents of that story, it meant she was unable to read or understand.  When she was unable to answer us, little things like, “where do we go to buy milk?” and she would giggle and say something completely unrelated like,  “it’s Mommy’s turn” I would then despair, look at my husband with fear and believe this proved, yet again, just how far we had to go.  There were other fears too.  Fears about what all of this meant to my child for her future, but increasingly I would try to head those off with a kind of stoic resolve to not give into them and to review once more the concept of quantity, or time, or value, or the spelling of a single-syllable word.

Of course looking back I see how wrong we were.  I understand now that the problem was she had no way of communicating to us what she knew.  She could not “tell” us, she could not “show” us in any way that we were able to see.  All those reading comprehension questions, all those work sheets, all that fear, all those days, months, years spent in terror…   I see this now.  I “get” it.  Now.  Now I get it, but for so long I did not.  For so many years I didn’t understand.  I kept thinking she couldn’t learn.  I kept thinking what was being said to her wasn’t understood.  I kept thinking that I had to use more basic language, that I was complicating things, that the answer was to dumb it down, to do more review, more repetition, more of the same, over and over until she could answer me in the way I believed showed she’d learned.

Meanwhile Emma patiently waited for me to understand.  Years went by and Emma continued to do her best, hoping, hoping we would finally catch on.  With Soma, Emma wrote how  grateful she was to us, her mom and dad, for “not giving up on me, I was so scared.”  And as I sat watching her type those words I wept.  Tears of gratitude for her, for not giving up on us, but also tears of sadness for all those years… years of misunderstanding, years when we just didn’t know.  Every time I would read about a child who did not speak, or did not have conversations using spoken language, but who typed incredible insights, thoughts and opinions, I believed they were an anomaly.  I didn’t dare believe my child could be like those few who were speaking out.  I didn’t dare hope.  I couldn’t.  It was too painful.

“They say hope is cruel for the hopeless, but maybe they are the cruel ones.”  Emma wrote this the other day and as she wrote those words I reflected on the irony of it all.  One day I hope this idea – that we mustn’t raise false hopes – will no longer be what parents like me are told.  One day I hope those people, the therapists, the educators, all those people, many of whom are in the field of autism, who mean well, but who do not know what our children are capable of, will realize how wrong they are and will stop trying to protect parents like me from what they believe is “false hope”, but it turns out is simply what they do not know and have not yet come to understand.

The hundreds of worksheets...

The hundreds of worksheets…

During the years when we labeled things

During the years when we labeled things

in large print before we knew she could read...

in large print before we knew she could read…

“A Letter To the World” ~ By Emma

                     “A Letter To The World

“I want to tell you that I am capable.  Daring massively, eager to prove my intelligence, I will work tirelessly so that Autistic children younger than me won’t be doubted the way I am.

“Plea-ing to the world, I ask that those who are not able to restrain their doubts, at least not mute voices like mine.

“Deciding stupidity bolsters egos while crushing lives with angry words disguised as kindness.

“They say hope is cruel for the hopeless, but maybe they are the cruel ones.”

Emma wrote this in response to my question, “What do you want to learn about?” (I gave her a number of choices ranging from people like Joan of Arc and Eleanor Roosevelt to geography, history, literature, creative writing or current affairs) “…or would you like to talk about something else?”  Emma wrote, “I want to talk about autism.”  When I asked her what, specifically, she wanted to discuss, she wrote the above letter.

*For all who would like to share Emma’s words with your friends and followers – we ask that you quote a sentence or two with a link back to this blog, and not all her words.  Thank you so much for your support, encouragement and enthusiasm.

Emma ~ 2014

Emma ~ 2014

Giving Hope…

During those first few years of Emma’s life, when we were so exhausted and everything was confusing, well-meaning people made pronouncements about Emma’s future.  If I had to choose one emotion to describe my feelings during those early years, it would be terror…  I was terrified.  The kind of terror that keeps you up at night and then, once you’ve managed to lose yourself in the welcome relief of sleep, you dream about elevators swinging in midair, doors that open up to emptiness, running to places only to find you keep ending up where you began…  and then… and then you wake up with a jolt of optimism, for a brief, few seconds you have forgotten your terror, only to have it come surging back, dispersing any wisps of residual optimism from days now gone…  You’re left bereft, empty, alone and yes, grieving… Grieving for that time when terror wasn’t something you were intimate with…

What I wanted during those early years, what I wanted later when Emma grew beyond toddlerhood, when she entered adolescence, all I wanted was for someone, anyone to say –  Don’t believe any of these people.  They have no idea what they’re talking about.  Don’t spend your time on the internet researching autism.  Don’t listen to organizations with Autism in their title, but that have few or no Autistic people occupying prominent positions in their organization.  Don’t believe any of those people who talk about “recovery” and liken your daughter’s neurology to disease or buy into therapies whose main goal is to make your daughter indistinguishable from her non Autistic peers.  Reject ALL of that.  Being able to speak isn’t the only way to communicate.  An Autism diagnosis isn’t a metaphoric nail in a coffin.  

I imagine those years of terror and how different our lives would have been had I met some of the people I now know.  People I have met on the internet, through their blogs, at conferences such as AutCom and the ICI Conference in Syracuse.  Conferences where I left feeling elated and euphoric because I witnessed all that was possible and not all that wasn’t.  How can we move beyond the current conveyor belt of fear that only serves to pad the pockets of Autism businesses run and created by non Autistic people, who do not seek out the active involvement of those very people they insist they are dedicated to help?  How do we dispense hope and what is possible amidst the maelström of deficit thinking?  How do we care for families new to all of this, those families whose children will be greatly affected by their parent’s terror?

We have to give eye-witness accounts of what is possible.  We must have resources available to families that will counter the predominantly negative views of autism.  Resources that do not condemn the parent or the child.  Resources that do not encourage terror, but offer hope and possibility.  Ideally I would have been given the list of books  I have on my “Resources” page and actual copies of these four books:  Autism and Representation Edited by Mark Osteen, Autism and The Myth of the Person Alone Edited by Douglas Biklen, Inventing the Feeble Mind: A History of Mental Retardation in the United States by James W. Trent Jr.  and Representing Autism by Stuart Murray.

Parents need support so they have the energy, patience and optimism to give their child the support and encouragement they need.  Therapists, professionals, educators, experts who are making a living working in the field of Autism must understand the importance of offering hope.  Hope based in possibility and reality.  No one is served by being terrified.  The only people who will be adversely affected if we stop the terror surrounding autism are those whose businesses thrive on such beliefs.  And to all those businesses – I say – Good riddance.

LifeThe possibilities are endless… 

There’s Always Hope

There’s hope and then there’s desperation.  Often I am not sure which one is pushing me more.  The feeling that with each year Emma grows older, the farther she is from her neuro-typical peers or the knowledge that others have progressed and come so far, therefore so shall she with various interventions.  At what point does hope turn into desperation?  At what point do you say, okay this is crazy, let’s stick with what we know works and stop pursuing the next treatment option.  How do you quell that irritating voice that is always urging you on?  Or am I being presumptuous?  Perhaps that voice is MY voice and not shared.  I always look to the couple of parents I know whose children have made massive leaps in progress.  The ones who have bypassed Emma, what did they do, that I haven’t?  And many times it seems to be a combination of things they did, often things we’ve tried, but that haven’t helped.  I even found myself saying this morning – I’ll keep this appointment with the thyroid doctor, but after this, no more!  That will be the last alternative thing we try.  But I’ve said this before.  I said that after the stem cell treatments.  I said that after the QiGong Master and again after the homeopathic doctor.  I’m pretty sure I said that after the Cranial Sacral/Shaman too, but I can’t remember for sure.  It’s my own version of Emma’s carousel.  Around and around we go, where will it stop, nobody knows.

This morning I stood in the shower with Emma, coaching her on washing her hair and body.  We’ve done this countless times before.  “Okay Em.  Grab the shampoo.”  Wait while she takes the bottle of shampoo, opens the top and pours some into her hand. Wait to see if she will lather the shampoo all over her head or just on the ends.  “Good, Em.  Now make sure you get the shampoo all over your head too.”  Wait.  “Go like this Em.  Do what I’m doing.”  Demonstrate how to get the shampoo lathered all over, including the hair just behind the ears.  Wait to see if she’ll do this on her own.  When she does not, help her.  “That’s great Em.  Now rinse the shampoo out of your hair.”  Wait to make sure she gets all the shampoo out.  “You have to rinse it all out, Em.  You have to make sure you get the shampoo out up here too.”  Point to her scalp.  Wait.  Try to ignore the urge to do it for her.  “There, now rinse.”  Wait.  Wait some more.  Wait to see if she will do it on her own.  Try not to help if it isn’t needed.  Try not to do things for her because it will be easier, faster or because I’m tired or just don’t want to watch her painstakingly try, only to still require help.

At what point will these instructions no longer be required?  And then the question that is a lesson in futility and despair, the question that always manages to creep into my thinking, even though I know better than to ask it because it’s a waste of time and only makes me feel the beginnings of panic – What if that point never comes?

Don’t go there – I tell myself the minute that question enters my mind.  Do not go there.

So I won’t.

A friend of mine’s husband was just diagnosed with Alzheimers.  “This story isn’t over yet,” she said to me the other night.

And neither is ours.  Not by a long shot.  Emma has her entire life ahead of her.  An entire life of one day at a time, one step at a time.  And that’s where there’s hope.

There is always hope.

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

Tolerance, Despair and Hope – Autism

A follower of this blog emailed me this morning about a new app for the ipad called, Pop It.  It’s a “book” that when one shakes the ipad, the perspective of the story changes.  The creator, an artist named Raghava, gave a talk on Ted.com, which is terrific – about perspective and tolerance of others and the role of art and creativity.  Listening to Raghava made me think of a book I am currently reading by the extremely talented and insightful theologian, James H. Cone.  His book – The Cross and the Lynching Tree is a deeply touching and powerful investigation of suffering and hope.  James Cone writes at length about the nature of faith, how God “could make a way out of no way”, how “hope could remain alive in the world of Jim Crow segregation.”

I do not claim to know of the existence, nor can I claim to know of the non-existence of a god.  I cannot even define that word.  It is not a word that holds any meaning for me.  But I do know what it is to struggle with hope.  Hope for Emma, hope for all our children who will grow up to become adults, who many will fear, ignore or just wish would go away.  Our children with autism are often misunderstood, in their inability to fall into line with societal norms they are in turn rejected by society.  The continued negligence and worse, abuse, of people with disabilities is rampant.  Their abuse is done by people who have deemed them incompetent, imbeciles and without value.  This is the common thread that exists in the abuse of all groups of people throughout history.  It is our intolerance of those we believe to be “less than” that makes us believe we have the “right” to punish, shun, ignore, hurt, torture and kill.

James Cone writes:  “The cross is a paradoxical religious symbol because it inverts the world’s value system with the news that hope comes by way of defeat, that suffering and death do not have the last word, that the last shall be first and the first last.”

When I was in my late teens I began using food as a way to quell anxiety and emotions I felt incapable of dealing with.  My overeating turned to full blown bulimia and the bulimia became a way of life – for 22 years.  I remember when I finally stopped, the idea of “surrender” seemed antithetical to all I had, up to that point, believed.  I thought that if I just had more will power I would be able to stop the destructive behavior.  I believed that the bulimia was something I could control.  I believed that my lack of control simply proved how despicable I was, which only served to fuel more of the same behavior.  It wasn’t until I took a leap of faith – really took in that I was, in fact, out of control, that I received a respite from the behavior.  Early in my “recovery” from bulimia someone said to me, “don’t you think that if you could have controlled the bulimia, you would have by now?  Isn’t it true that in fact you have tried to control it all these years and this is where that control has gotten you?”  With a great deal of support from others who had eating disorders and had come out the other side, was I finally able to find a way out from under it.  In surrendering to the fact that I was unable to control it, was I finally able to find freedom from it.

I’m all over the map with this post, but perhaps some of these thoughts will prove helpful to someone else or if not at least encourage thought and conversation.

For more on Emma and our journey through her childhood of autism, go to:   www.EmmasHopeBook.com

Unreliable Witness

Yesterday I received a call from Emma’s school saying she was crying and her ears hurt.  She was inconsolable.  By the time I arrived to pick her up, she was cheerful and eager to, “Go see Doctor, you have to say ahhhh.”

“No I don’t think so, Em.  I think she’ll want to check your ears, make sure you don’t have an ear infection,” I told her.

When we were ushered into the doctor’s office, Dr. K. said to Emma, “Emma, can you shut my door?”  To which Emma immediately got up, ran over to the door and shut it.

“Thank you, Emma,” the doctor said.  She then proceeded to check Emma’s ears, which were fine.  After the exam I discussed some of our concerns regarding Emma’s progress.

“But she’s doing really well,” Dr. K. said.  “Her language…  She’s speaking more each time I see her,” she added.

I thought about a conversation I had with my brother, Andy a couple of weeks ago.  Andy is a physicist, whose thoughtful opinion I have come to rely on.  He called one morning, as he often does, while on his way to work.  I began crying as I told him how worried I was about Emma.  “I just don’t know that increased eye contact is enough to warrant another round of stem cell treatments,” I said.

Andy reminded me eye contact was the manifestation of a great deal more than “just eye contact”.  He went on to say that an increase in eye contact was significant as it suggested an increase in relatedness as well as cognitive awareness.  He told me he saw it as extremely positive and advised me to not be quite so easily discouraged.  By the time we ended our conversation, I felt much better.  I felt a tremor of hope.

As I sat listening to Dr. K., I realized – I am an unreliable witness.  Whether it is because I am impatient, have high expectations or am too emotionally caught up in the daily struggle to see the improvements others see, it is clear to me, I cannot entirely trust my perceptions of my daughter.

I have mentioned this before, but whenever we go to Colorado, about four times a year, my mother can be counted on to say, “You know, she’s better.”

To which I predictably respond, “Really!  Do you think so?  In what way?”  I cannot say how many times my mother and I have had the above conversation.  One that is repeated with many of our close Coloradoan friends as well.

I am reminded of my recent post regarding Emma.  How my favorite times spent with her are when I have no agenda, no expectations.

How’s Emma?

Emma is.