Tag Archives: hope

There’s Always Hope

Posted on December 8, 2011 | 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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Posted in Autism, hope, Parenting

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Tolerance, Despair and Hope – Autism

Posted on September 13, 2011 | 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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Posted in Autism, hope, special needs

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Unreliable Witness

Posted on September 30, 2010 | Leave a comment

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.

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Posted in Autism, Parenting

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