Tag Archives: Faith

Letting Go and Trust

Yesterday Emma did another “catch” at her trapeze school.  Yesterday’s catch was more complicated than the one she perfected a month ago and I cannot wait to see it.  I asked Em last night whether I could post it here and she said, “Yes!  Post on blog!” Since Em’s therapist, Joe, hasn’t had time to upload and send me the link from yesterday , I’m sorry, I can’t help myself, I am posting her first catch from a month ago AGAIN.  Watch all the way through to hear what Em says at the end, it makes me teary just thinking about it.

2Watching her flying through the air makes me happy.  Seeing her joy and sense of accomplishment, makes me happy.  The first time I watched her swooshing through the air I felt a mixture of joy and trepidation, the second time a soaring hopefulness of all that is possible, the third time pride, knowing how hard she has worked, trained and practiced to get to this point.  Years.  Years of practicing.  Just now, as I watched it again, I was reminded of how, it is the connections with other people who make our lives full and joyous.  Connections rooted in trust, compassion, love, and a sense of belonging.

3When Emma releases the bar and reaches out to grab the forearms of the other person, I cannot help but hold my breath.  Even though I know the ending to this particular story, I still hold my breath.  Will they catch her?  Will she fall?  Will she get hurt?  Can she trust them, rely on them to be there for her?   As I write this I know these are universal questions.  Questions I have asked with both my children in mind, questions I have asked about everyone I’ve ever loved.  But in this one instance Emma trusts the other person will be there to catch her and the tears fill my eyes because they are, yet I know this won’t always be the case.   As much as I want to convince myself that I have that power to always be there, to have every situation in my control, there will be times when I won’t be able to protect her from the disappointment and heartache that will come from trusting someone who cannot be relied upon.

But before I drift off into a melancholy laced reverie, I have to remind myself that this is my interpretation of how my daughter may or may not feel when faced with disappointment and the deep sadness that comes with trusting someone, only to feel let down by them or worse, betrayed.  My daughter has a very different outlook on life than me.  She has proven to me repeatedly that my life experiences are not accurate lenses with which to view or predict her life.  The beauty of being a mom is realizing my ideas about how my children will or won’t cope with the things thrown at them are not necessarily correct.  I believe this is what older parents of children who are now adults refer to as “letting go”!

In the twelve-step rooms there’s a great deal of talk about the g-o-d word.  It’s not a word that brings me any degree of solace, so I’ve learned to do what my friend Ibby calls a “work around”.  I don’t do the g-word, but I have faith.  Faith that if I am kind, generous and try my best to be of service, I will be better off than if I’m not.  This thinking doesn’t ensure those I love will always be safe, but it helps me stay centered and present one day at a time.  I can hear Richard’s voice in my head saying, “What?  That’s it?”  And my answer is to laugh and say, “Yup.  That’s pretty much the extent of my wisdom.”


To the Person Who Googled “I don’t know if I can handle Autism”

I have three things I need to say to you.

First.  Come.  Talk.  Find a safe place where you can talk without being judged, somewhere private, somewhere and with someone(s) who will understand and listen.

Second.  Fear.  Feel the fear.  It’s impossible for me to talk about autism without talking about the abject fear I used to feel, every single day, every moment.  They say fear can be informative.  This was not my experience of it in the beginning, I was running too fast and doing so much to avoid it.  Fear drove me to do a great many things I regret.  I wish I could tell you I have no regrets, but I do.  So, so many regrets.  Avoiding the fear is just one of them.  I wish I’d sat with it.  Leaned into it and listened to it, without believing what it whispered to me as though it were fact.  Listen to it, but don’t believe it.  Who knows what I might have learned all those years ago.  Who knows had I done that, what mistakes I might have avoided.  Who knows?

You see, fear was the driving force behind my relentless search for a “cure”.  Fear is what made me think anything I did was better than doing nothing.  Fear drove me to rationalize some dangerous and very risky “interventions” because I thought to do otherwise was wrong.  It was my fear that kept me up at night, on the computer, typing one more search word into Google’s vast engine, hoping I would find the thing, the remedy, the treatment, the pill, the tincture, the doctor, the nutritionist, the biomed doctor, the QiGong Master, the homeopath, the naturopath, the GI specialist, the thyroid specialist, the speech therapist, the occupational therapist, the cranial sacral doctor, the shaman, the Zuni chieftain, the psychic, yeah you read that right, the psychic, each and every one of these people I put my faith in.  I convinced myself that this person, finally would be the ONE.  They would reach out their hand and show me the path I needed to take.

All those words used to describe autism and Autistic people, our children or parents or siblings, all those words like, “burden”, “epidemic”, “crisis”, the war terminology evoked telling us how we must “fight” and “combat”, all those words like crumbs left in a dark forest were words I believed and used and never, never once during those early years did it occur to me to question them.  For those who did, well, they obviously didn’t have a child like mine.  You had a child who was less profoundly affected by autism than mine.  This was my thinking, this is what I believed in my heart.  (This is my story, it may not be yours, but it is the only story I can tell.)

Third.  There is a documentary I love.  I have watched it many times now.  It’s called Wretches and Jabberers.  I’m not going to tell you more, you just have to see it for yourself.  It’s available on iTunes, Netflix and Hula.   You can purchase a copy from Amazon.  Even if you ignore every other thing I’ve written here, just watch it.  It is a documentary that every human being on this planet should see, because it is about more than just autism.  It is about our beliefs and how our beliefs make us behave in ways we might not otherwise condone.  It is about prejudice and fear and ingrained thinking and the inherent limitations all of that encourages for those who are different.

And finally remember this – just because someone does not speak, does not mean they have nothing to say.  Just because someone cannot make their needs known, does not mean they have none.  Just because someone does not tell us they love us does not mean they do not.  Just because someone does not look at us, does not mean they do not see us.  Just because they do not seem to understand in a way that we recognize, does not mean they do not and cannot.  Just because we think they are ignoring or cannot hear us, does not mean they are or do not.  Just because we think someone cannot write or read does not mean they can’t or never will.

Just because we feel, in this moment, we cannot handle something does not mean we can’t.  With support, we can and we will.  And so will our children.  They can, they do, and with help, they will.  Believe this and you will not only help your child and yourself, you will help the world and all human beings who inhabit it.

Choose to believe.

Emma on her 4th Birthday – 2006

Em - 2006

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