Category Archives: hope

New Beginnings

Posted on October 2, 2014 by | 25 comments

Emma suggested I write about “new beginnings and offering ways to practice tolerance and hope for those who despair.”

I asked Emma what she suggested to those who are in despair.  She typed, “Best to give despair less space.”

“Yeah, okay.  How do you suggest people do that?” I asked.

“By filling the mind with all the beauty that is life,” Emma typed.

Yesterday Emma, B. and I talked about what happens when one becomes overwhelmed and how this is a human response, no matter what the neurology.  Overwhelm and feelings of not being able to cope are things all people feel from time to time.  We discussed different ways people try their best to cope: taking a break, taking a nap, acts of kindness, identifying all one has, gratitude, helping others, being alone, quiet, taking a bath or a walk, being in nature…

Emma described her feelings of overwhelm as, “my mind becomes jumbled and louder.”  Her words certainly resonated as this is exactly how I feel as well when everything seems too much and feels more than I can cope with.  Then Emma typed, “there should be practice before it gets too jumbled.”  This then led to a discussion about meditation and how those who meditate regularly call it “practice” because it is something one does daily and can help when “the mind becomes jumbled and louder.”

At the end of a lengthy conversation Emma typed, “I do want to try meditation.” And so we will.

The Buddha with Merlin

The Buddha with Merlin

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Posted in Autism, hope, Parenting

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Finding Hope ~ By Emma

Posted on June 2, 2014 by | 15 comments

“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.

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Posted in communication, fear, hope

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Peering into the Darkness

Posted on September 5, 2013 by | 23 comments

Sometimes there is such tremendous darkness, it scares me.  Sometimes my instinct is to go deeper into the darkness.  Sometimes my instincts are not helpful.  Sometimes my instincts lead me the wrong way.  Sometimes…

When I was in my thirties I went down into the darkness, so deep I began to wonder if I would ever find my way out.  There was a moment, a moment when I stood at the edge and contemplated the void.  It felt blissful.  The darkness seemed to hold the answers I sought.  The darkness held the promise of calm and peace and quiet from all the noise and pain.  It beckoned to me and I believed, for a moment, I believed it was the answer.

I would like to report that in a single instant I made the decision to step back from the edge, but it wasn’t like that.  It was hard to move away.  It was difficult and painful and there was nothing elegant or easy about it.  Stepping away was more like an agonizing scramble of falling, tumbling backwards and clawing forward, grabbing on to whatever scrap of hope I could find.  Some days felt like a slow, steady, groveling crawl on my hands and knees just to get through the hours that make up a day.  And on those days I believed this would be my life forever and I wondered how I could continue.  It was on those days, when I believed I knew what the future held, those were the days that were the hardest.

There are tricks I learned, little things I learned to do, some are silly perhaps, but I do them anyway.  When things feel like they are too much, I tell myself I can get through the next hour, just one hour without hurting myself or anyone else.  Just for the next hour, I will not do or say anything that will cause harm.  Just for this next hour.  And when that hour passes, I take the next hour, one hour at a time.  I have done this for many years now and funnily enough, this method of taking one small manageable segment of time and being present for whatever it may bring continues to work.  During those early days when all of this was new to me, I even gave myself permission to do whatever it was that I wanted to do, but knew it would hurt me after the hour had passed.  Then the hour would pass and I would see I had gotten through it and I would say, okay, just one more hour.  I can get through one more hour.  And I did one hour at a time, I did.

I learned to make phone calls or text people I trust and know are safe.  I let them in, I asked for help.  Sometimes help meant listening to another person, sometimes it meant they listened to me.   I learned I had choices, even when it felt that I did not.  People had to remind me to do the thing that everything in my being screamed at me not to do – reach out in kindness to another.  Sometimes even when I could not muster up the strength to be kind to myself I could show kindness to another, so I do at least three anonymous acts of kindness. (Using the present tense now.)  The anonymous part is important.  It’s imperative that my actions are not about getting thanks or being appreciated, but are about actively taking actions where I can be the person, even if only for a few minutes, I would like to one day grow up to be.

I look back on those years, so long ago now and no longer recognize that person who contemplated the darkness.  I do not know her.  She is unfamiliar to me and I’m grateful.  Mine is but one experience, there are countless others.  I have no answers.  All I know is that to keep the life I now enjoy, a life I could not imagine myself ever having, a life that, so many years ago, would have seemed too good to be true, I must do certain things on a daily basis to make sure that tomorrow and the next day will not involve being anywhere near the edge where I am tempted to peer down into that pit of darkness and contemplate its depths.

If you or someone you know is struggling, reach out for help.  Tell someone else, let them help and remember you are not alone.

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Posted in Addiction, depression, hope

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Giving Hope…

Posted on May 24, 2013 by | 16 comments

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… 

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Posted in Autism, hope, Parenting

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There is Always Hope, Sometimes It’s Hard To Find

Posted on August 22, 2012 by | 22 comments

Sometimes I feel completely inadequate in the face of our society’s insanity.  Sometimes I wish I weren’t a part of the human race.  Sometimes I feel so much rage at all that’s WRONG with the world, with the mess we’ve made of our planet and each other.  Sometimes I just want to go live in a cave in some part of the world that isn’t inhabited by other people, just me, my husband, my children and a few select others.  I want to build a new world, a new community, a new set of societal rules where minority doesn’t equal less.  Where prejudices weren’t tolerated, where people helped each other without expectations of what they would get in return.  A place where people understood that the reward in helping and being of service to our fellow human beings was in the act of doing and not in the form of monetary gain, gold medals, our names engraved on plaques or statues carved in our likeness.

I spent most of my twenties and half of my thirties in hiding.  I hid inside my eating disorder.  I drank more alcohol than my body could cope with, I smoked cigarettes, I took drugs, I did anything I could NOT to be present.  Even in those moments when I did manage to show up, I wasn’t really present.  Not completely.  Not really.  I was angry and hated how angry I was.  I was depressed and hated how depressed I was.  I couldn’t face any of it, for so many years, I just couldn’t.  Eventually I became suicidal.  I couldn’t stand the feelings any more.  I was filled with so much rage, I turned it inward and thought the answer was to kill myself.  I remember I fantasized about driving to a state where I could buy a gun.  That was how I wanted it all to end.  I would blow my brains out.  I was seeing a therapist and when I admitted this to him he said, “You have to go to a 12 step program.   You have to find people who are struggling with an eating disorder just as you are.”  When I told him all the reasons why this was not a possibility he leaned forward and said, “What have you got to lose?”  I will never forget that.  I will never forget how he looked at me.  I will never forget the feeling I had when he said those words – “What have you got to lose?”

So I went.  And I hated it.  A bunch of obese people, a couple of anorexics and an assortment of others sitting around talking about how they couldn’t stop eating or starving or obsessing.  I was horrified.  How had I ended up here?  Wasn’t I different?  Wasn’t I better than this?  I remember I looked around that circle of people in that dingy room lit with strands of donated christmas lights, despite the fact that it was March, and the signs with various slogans plastered on the wall – “We came for the vanity and stayed for the sanity”  and “One Day At a Time”  and “Progress not perfection” and I thought to myself, I have entered hell.  This is not what I want.  This is not where I want to be.  I am not one of these people.  I am BETTER than them.  I don’t NEED to be here.

But I stayed.  Because really, where else was I going to go?  I knew what lay outside the door of those rooms.  I knew, left to my own devices, I would binge and puke and rage and cry and binge and puke.  I knew the cycle, I’d been doing it for more than twenty years.  So I kept going to the “meetings” and I bought the literature and people gave me little notes with their phone numbers and hearts on them that I’d promptly throw away, but they kept giving me more notes with more little hearts and more phone numbers and eventually, eventually I called one of these people and they took the time to talk to me.  There were the steps, each one mapped out a way of behaving that was different from the way I lived my life, so I began doing them, never once thinking that those “steps” would become a way to live my life more than a decade later.  There was a great deal of talk about taking the next right action, staying in the present, taking things slowly, changing ingrained behaviors and being of service.  There was talk of “god” and again I felt there was no hope for me.  How could there be?  I didn’t believe.

I have never believed in god, I’ve tried, I just don’t, but I do have faith.  I have faith in human being’s ability to do great things if we are shown how.   Some of us need more help than others.  I’m one of them.  I needed a great deal of patience, support and help.  I needed to have my hand held by those who had once been where I was.  I needed others to show me the way.  I needed to hear about their struggles, I needed to know that I wasn’t alone.

When Emma was diagnosed, I had a road map, instructing me, helping me.  All those meetings spent in dingy basements without heat in the winter or air conditioning in the summer had shown me another way.  I knew, if nothing else, I had to keep showing up.  There were days I didn’t want to.  I’ve done a great number of things I wish I could take back.  I’ve made countless mistakes.  But I know, I know with all my being that hiding, that not showing up, isn’t an option.  So I research, I read, I reach out to Autistics, I listen, I ask questions and I try to learn everything I can so that I can better understand and help my daughter.  In helping my daughter, I am helping myself.  I am helping myself become a better human being.  There are mornings when I wake up and think, What the hell am I doing?  I don’t know how to do this.  I don’t know what the right decision is.  Is this the right school?  Is this the best therapy?   Does she understand?  What would she say if she could communicate her thoughts?  What would she tell me?  

Much of the time I don’t know.  What I do know is that the basic principles and actions that got me free from the grip of my eating disorder are the same actions and principles that help me parent both my children.  Be honest.  Find safe people to talk to.  Have the willingness to show up.  Be present.  Reach out to others.  Ask questions.  Listen.  Really listen.  If I’m overwhelmed, acknowledge that.  Take a break.  Sometimes doing nothing is better than doing something.  But the thing that helps me more than anything else (I know I’ve said this so many times) is to be in conversation with Autistics.  When I am feeling sad or confused, or overwhelmed, or have questions, I reach out to my Autistic friends.  And even when they don’t know the answer to my question, they remind me of what’s possible.  They remind me that my neurotypical take on my daughter is often incorrect.  They remind me of all the misinformation out there.  They remind me of what is important.

So for any of you reading this who are despairing, who feel it’s hopeless, that the divide between your child and you is too great, know this:  There are hundreds and hundreds of verbal and nonverbal Autistic adults who are blogging, on Facebook, on Twitter, they are talking, they are asking to be heard, they are asking to be respected, they are asking for the same rights as any other human being, they are asking to be treated as you would want to be treated.  Reach out to them.  Google, read books, read blogs, get on Twitter and Facebook, do the research, ask questions, make comments.  If you’re suicidal or feeling you can no longer cope, get help.  Get support.  There are a great many organizations like 12-step programs that do not cost anything, but rely solely on donations given voluntarily.  Find the people whose voices resonate and then find more.  Because really, what have you got to lose?

2002 – Me with Em and Nic

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Autism, Assumptions and Perpetuating Misperceptions

Posted on July 24, 2012 by | 25 comments

I was going to write something about the Aurora shootings, but I think it’s better if I give some links to things others have written.

This link is from Lydia Brown on her blog Autistic Hoya – All I Want to do is Weep.  She wrote it last Friday, July 20th before Joe Scarborough, whose son is Autistic, weighed in with his damaging, destructive words, needlessly adding fuel to the flames of ignorance and misperceptions that roar whenever the word autism is spoken.

Then, just as Lydia and others within the Autism community predicted, Joe Scarborough said,  “As soon as I hear about this shooting, I knew who it was. I knew it was a young, white male, probably from an affluent neighborhood, disconnected from society — it happens time and time again..”  He added, “Most of it has to do with mental health; you have these people that are somewhere, I believe, on the autism scale. I don’t know if that’s the case here, but it happens more often than not.”

His words, so predictable, so incredibly stupid it would have been comical had it not been so very harmful to so many.  When I read his comments I thought, people will read Lydia’s piece and assume she’s psychic, because that would be the only explanation for her ability to predict such a thing.  Right?

Kassiane Sibly wrote on her blog Radical Neurodivergence Speaking – Open Letter to the Media in the Wake of the Aurora Shootings

Paula Durbin-Westby wrote: Autism, Aurora Shooter, and Actual Crime Statistics

Rachel Cohen-Rottenberg wrote: Despicable: Joe Scarborogh’s  Words on Autims and Mass Murder

And finally here is the petition Rachel started, demanding Joe Scarborogh retract his statement.  Please sign.  This is too important.

Sign this Petition

These “theories” and it seems they are always “theories” which appear to be code for “opinion” are doing damage to people who are living their lives in a society that not only does not understand, seems unwilling to understand and even actively refuses to understand despite all the people who are trying to help them understand.

Autistics are saying – LISTEN TO US!   And we look around and say, huh, I don’t hear anything.

Autistics are saying – STOP SAYING THINGS ABOUT US WITHOUT INCLUDING US IN THE CONVERSATION!  And we look around and say to one another, Huh.  Did you hear something?  Nah.  Carry on.

Autistics are saying – NOTHING ABOUT US WITHOUT US and we say, I don’t understand.  Why are they so angry?

Autistics are saying – YOUR MISPERCEPTIONS ABOUT US ARE HURTING US and we say, oh those autistics are not like my child, that’s not what my child would say.  My child is nonverbal.  My child can’t type.  My child doesn’t have a blog.  My child can’t say the things those Autistics can say and do.  My child is different.

How do you know? 

How do you know?

Joe.  You made a mistake.  Retract.  Apologize.  Make amends.  Have an Autistic on your show.  Listen to them.  Listen to your son.  Do the right thing, educate yourself.  You have a massive following.  You could make an incredible difference to so many lives including your son’s and your own.

I will end with this thought. I choose to presume competence, not just in Emma, but in myself and in my fellow human beings.  We ARE capable of listening to one another.  We ARE capable of shifting the perceptions of autism and Autistics, one person at a time.  I believe that, because to do otherwise is to live in a world I cannot and do not want to be a part of.

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Posted in Autism, disability, hope

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Murder, Fear and Hope

Posted on April 5, 2012 by | 11 comments

An autistic child has been murdered.

Again.

His name was Daniel Corby.  He was 4 years old.

(The following is by no means a cohesive or complete list.)

March 2012 – mother kills George, her 22 year old autistic son.

August, 2011 – mother shot and killed her 13 year old autistic son, Ben.

July, 2011- mother strangled her two autistic children, a 2 year old daughter and 5 year old son.

May 2011 – mother kills her autistic son, Glen by strangling him with the belt from her coat.

February, 2010 – mother killed her 8 year old autistic son, Jude.

2010 – Mother kills 6-month old son, Rylan because she suspected he might have autism.

2009 – Father kills 11 year old autistic son, Jeremy.

2009 – mother withholds medication from her autistic son, Jeremy who has leukemia.  Jeremy dies as a result.

Our outrage, our pleas that these murders stop, our desire to blame, rationalize or even understand will not bring any of these children back or prevent another parent from murdering their child.  What can make a difference is a change in the way we as a society view autism and autistic people.

The word “autism” causes fear.  So little is actually understood about autism and so much of what people hear are theories, it is natural that people would find autism frightening.  We fear what we do not know or understand.  This has been true throughout history.  The ever changing “statistics,” the words used to describe autism, the vastness and mutable nature of the spectrum, how indefinable it is, all add fuel to the fear.  It doesn’t have to be this way though.  And that is where there is tremendous hope.

A year ago I regularly lay awake at night worrying about my daughter, Emma’s future.  I knew of very few adults with autism, I had read everything written by both Donna Williams and Temple Grandin, but their experiences seemed far removed from my daughter’s.  All of that changed when I began following blogs written by autistic adults.  I had an “aha” moment.  The moment of realization and understanding when what was once abstract becomes real.  A friend of mine told me of her “aha” moment during an autism conference she attended where she saw a nonverbal young man who reminded her of her son.  He had the same gestures, the same stims as her child.  She imagined this was her son in 15 years and she was filled with despair.  The following day she returned to the conference and attended a workshop on facilitated communication, led by…. none other than the young man she’d seen the day before.  Only now he was communicating his thoughts.  His words were intelligent, articulate and heartwarmingly beautiful.  She left the conference in tears realizing how she had underestimated this young man, as well as her own child.   She vowed never to do so again.

Assume competence.  Even if there is no “proof” that our neuro-typical minds can hold onto, we must assume competence.  Because to do otherwise is to fail our children.

I have written about much of this at length in other posts, so I am not going to continue now, but I strongly urge anyone who is frightened to read the blogs written by autists.  The veil of mystery may be lifted.  It was for me.  Reading the words of autists alleviated my worries.  Here were adults who were leading the way, so that those, like my daughter, Emma, might not have to. My life, so long dominated by fear is now dominated by hope.

There is a large and thriving community out there of both autists and parents of autists who are writing, blogging, commenting and reaching out to one another.  The only requirement to join this community is a desire for connection.  Because of the internet, we all have a support system if we want it.  No parent or autist need feel alone.  The autists are the ones who can and will change the current perception of what it means to be autistic.  They are writing and speaking forcefully, beautifully, with eloquence and power.  I have said this before, I will say it again:  We must listen to them.  They need to be included in any discussion, organization or conference regarding autism.  More importantly, they need to be included, period.  Some parents have said to me – but they have blogs.  They can talk.  They are articulate, while my child is non-verbal, self-injurious, cannot attend to his basic daily needs.  And my response is – Yes, that is exactly why we must listen.   Just because some of our children cannot speak or those who do may not be as articulate, doesn’t take away from the fact that these autists can and do.  If our children could speak as eloquently – how do we know what they would say?  If they could speak, wouldn’t we listen?

The following is a list of wonderful blogs that have literally changed my life:

Aspie Rhetor

Autism and Empathy

Autistic Hoya

Dude, I’m an Aspie

I’m Somewhere Else

Journeys with Autism

Juniper Hills Farms

Just Stimming

Life With Aspergers

Moonlit Lily

Quirky and Laughing

ThAutcast

The Autistic Me

The Third Glance

For parents with non-verbal autistic children:

Read any book written by the autist Tito Mukhopadhyay

Carly Fleishmann

Another youtube video of Carly

Interview with non-verbal autistic adult

In addition, for anyone who has an autistic child no matter where they fall on the spectrum, please read this interview with Henry Markram on his Intense World Theory for Autism.  It is the first time I’ve read a “theory” that validated everything I felt I saw in my daughter, Emma.

We may not be able to stop parents from murdering their children, but we can change how people view autism.

We must not succumb to fear.  Hope is all around us, we need to stop and listen.

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

For my most recent Huffington Post piece, go to:  HuffPost

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There’s Always Hope

Posted on December 8, 2011 by | 4 comments

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

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Cheerios

Posted on December 1, 2011 by | Leave a comment

Yesterday morning I asked Emma if she’d like to have some Cheerios for breakfast.

“Yes!  Cheerios!” she shouted.

I poured some into a bowl and then gave them to her with vanilla unsweetened rice milk.  She hesitated before digging in.  “I like Cheerios,” she announced.  “Cheerios for dinner?”

“No Em.  We’re not going to start having Cheerios for every meal again.”

“Just for breakfast,” Emma said, nodding her head up and down.

When I came into the kitchen this morning, Emma had placed the box of cheerios with a half gallon container of regular organic cow’s milk on the kitchen counter next to a bowl and spoon.  “Oh no, Em.  You can’t have this milk.  You can have your Cheerios with this one.”  I handed her the rice milk.

“I don’t like that one.”  She turned away and said, “No more Cheerios.  Have toast with cheese in the bakery instead.”

“In the bakery” is what Emma says when she wants something heated up in the oven.  When she first said it last summer while we were in Aspen, we were all confused.  I even took her to a restaurant in town called – Main Street Bakery.  Eventually we figured it out – she wanted to have two slices of bread, lathered with butter, put on a cookie sheet and then baked in the oven.  She likes to sit on the floor next to the oven door, periodically peering through the window into the oven until it’s done.

But this time she added that she wanted cheese, which was a first.

“Here Em, which cheese do you want?”  Barely able to contain my excitement that she was asking for something different, I showed her the three different kinds of sheep’s milk cheese and one goat’s milk cheese so she could choose.

“This one!”

“You wore her down,” Richard said.  “What happened to the Cheerios?”

“She doesn’t like the rice milk, so she won’t eat them.  Anyway, I noticed they have corn starch and she shouldn’t have anything with corn.”

Richard nodded his head and kept walking.  Richard has never been a huge proponent of this second round on the GFCF diet.  His feeling is – we tried it when she was two with no change, why would it do anything now?  But being the kind, supportive and generally awesome guy that he is, he has gone along with it.

I know none of this makes any real sense.  Emma has shown no significant uptick from taking all these various foods away and it’s been almost seven weeks.  But still I hold out hope, against all reason, against all evidence, against anything rational.  If I’m being honest, I have always wondered whether I didn’t do the GFCF diet right the first time around.  Maybe I wasn’t strict enough, maybe there was a food that she shouldn’t have had that I didn’t know about.  One can drive oneself crazy with this kind of thinking.  I know.  My husband knows.  Definition of crazy:  Doing the same thing over and over again and expecting a different result.  So yes, I get it.  But, for what it’s worth, here’s my (crazy) thinking – she didn’t test intolerant for gluten, so we’re putting it back in, but staying away from all the things she did test an intolerance for just in case some of those might be causing her problems.   I cannot imagine there will be any change, though.  Hope doesn’t rest on rational thinking however.  At this point I’ve downgraded my expectations to the idea that she’ll expand her diet.  It would be so nice to go out occasionally to a restaurant as a family.

It would also be so nice to have a personal chef – and that wish hasn’t transpired either.

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

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A Look Back

Posted on November 28, 2011 by | 4 comments

When Emma was first diagnosed Richard and I decided to start noting her progress in a little leather bound book we entitled – Emma’s Hope Book.  The idea was that it would be just that.  A book filled with hope.  After the first few months of making sporadic entries, we wrote in it very little.  We were immersed in Emma’s “boot camp” of 35 hours of ABA, with therapists coming and going, then there was the speech therapy and the occupational therapy as well as the homeopath, the cranial sacral therapist and the DAN doctor.  In addition, I was caring for Emma’s older brother Nic, who we had decided to keep out of nursery school, (even toyed with the idea of homeschooling both the children) before we knew of Emma’s diagnosis.

A few months ago I came upon the original Emma’s hope book and flipped through the 27 entries spanning the time of her diagnosis – 10/2004 – April/ 2010 when I began this blog.

The first entry was written by Richard in October, 2004.  He wrote:  “Emma said, “Peek-a-boo-I-see-you!”  Pointed to her eyes when I said, “no eyes.”  I said – “Bertie hit you with his tail” and she immediately grabbed his tail.”

In the beginning we looked for any sign of understanding or attempt to communicate, no matter how small.  While other two-year olds know well over two hundred words, Emma said very little.  It was difficult to gauge how many words she really knew, as days would go by with no words spoken at all, then other days she would say half a dozen words that she never repeated.  I now wonder that those words weren’t things she’d heard and was echoing back, but didn’t really know or understand.

In any case, the first Emma’s Hope Book never got off the ground.  It was suppose to be a document of hope, something we desperately wanted to feel, but often had in short supply.  We would hear of some new treatment, a diet, biomedical intervention, or therapy and would feel a surge of hope, only to feel that hope dwindle as the months wore on and she made little if any progress. When we learned of the stem cell treatments in Central America, we felt another surge of hope, which was when I began this blog.  It was intended to show her progress from the stem cell treatments.  By the third treatment, we still hoped stem cells would be the thing that threw Emma out of her “autism” and into our world of “normalcy.”  But whatever progress she’s made from the stem cell treatments is not something we can pinpoint or even know with any certainty.  They may have helped, but they just as easily may not have.  We never saw such a massive uptick that we were left without doubts as to their effectiveness.  This has been our experience with almost everything we’ve tried.  All the biomedical interventions, all the behavioral therapies, all of them have done very little.   Or perhaps it is more accurate to say – None of them have had a huge impact.

But, call us crazy, we keep trying to find ways to help her.  We keep looking.  We try to keep an open mind.  We try to keep our hope alive.  There are days when our hope falters, though usually it is just one of us who feels particularly glum and the other is able to infuse some hope into the conversation.  Every now and then we both feel a lack of hope and that is when we will remind each other to look back.  We look at how far she has come.  The one intervention that has made a huge difference is Emma’s literacy program.  We remind each other that just one year ago, Emma couldn’t form all the letters of the alphabet, now she is writing complex sentences, uses the past tense and is often able to use the correct pronoun in answering a question. She did not know what a math equation was, let alone able to solve one or write one.  We are often exhausted, but even through our exhaustion we are able to enjoy and appreciate Emma in all her Emmaness.   Just as she is.

Emma found this old Halloween Costume of Nic’s and put it on saying – “I’m a monster!”

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

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Tolerance, Despair and Hope – Autism

Posted on September 13, 2011 by | 5 comments

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

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