September 5, 2011

Breaking the Seal

Hope springs eternal in the human breast;`
Man never Is, but always To be blest:
The soul, uneasy and confin'd from home,
Rests and expatiates in a life to come.

--Alexander Pope,
An Essay on Man, Epistle I, 1733

Hope springs eternal ....

But does it?

For those of us who have brought a child into this world, so filled with excitement and plans and dreams,

so filled with hope .....

Only to hear the labels,

to see the signs,

to watch as our children's peers do all the things we thought our sons and daughters would do ....

somewhere along the journey the word "hope" takes on a new meaning,

if it doesn't leave our vocabulary altogether.

I do not wish to speak for anyone other than myself.

Because even though the path each special-needs-parent travels is sure to intersect with the roads of others ....

even though, if we are lucky, we find cherished friendships along the journey with parents who understand because they live it ....

Still, at the end of the day, we process our pain alone.

And we handle it, or fail to handle, on our own.

So, I speak only for myself when I say that I have had difficulty with hope the past few years. Other special needs parents, without a doubt, have had a much stronger handle on hope than have I.

I had it once. Four years ago, I moved myself and my kids 350 miles away from the city where they were born. I did it so Daniel could go to a school that offered special services to children with autism. I counted down the days until my husband would be able to be with us all the time, and I did my best to make two little children happy, even though I was filled with nervousness and fear and worry.

I still had hope then, even though I was anxious, even though my dreams for my son already were considerably altered from what they were when Daniel was born.

I had hope that Daniel would get the help he needed at his new school, that he would be able to talk to me.

That is really all I wanted: for my son to be able to talk to me.

Screw college degrees and baseball games.
Who gave a crap whether he ever read Shakespeare or learned the quadratic formula.
I just wanted to hear his voice.

It didn't happen.

And what happened instead? What I believed in -- what I based my life on -- turned out to be untrue. I had an up-close view of viciousness in its worst form, and I experienced a difficult lesson in how little words actually mean when the people who say them aren't willing to take actions to back them up.

And my son still can't talk.

Somewhere along the way, my hope vanished.

It poured out of me along with so many other things ... things that are impossible to retrieve.

But, hope, dare I say it, really does spring eternal -- at least when it comes to your child.

For a moment last week, someone gave me a little hope.

A speech therapist, one whom I respect tremendously, evaluated my son. She already knew him because he previously received services at her clinic. She didn't work with him individually but she consulted. She is in great demand, you see -- she is that good.

She is awesome.

I asked her to do an evaluation that I could present to our school district (because I am disappointed at the level of services currently being offered to my son, but that is a story for another post).

Her special area of expertise is PROMPT therapy, which is designed to help kids, like Daniel, with apraxia (which, when added to autism is such a one-two punch in the gut).

After the evaluation, she told me how well Daniel responded to her PROMPT techniques, much better than the last time when he was in her clinic more than a year ago.

I said something about Daniel already being eight-years-old.

She stopped me, and she took me into a private room, and she said:

This kid can be talking.

This was last week, and those words brought tears to me eyes when I heard them -- just a few because I was in public, after all.

But, now, as I type this, there is a torrential downpour.

So many times I have put dreams on a shelf.

So many times I have looked into my son's eyes, so thankful that he shows love and affection for me in ways I cannot doubt, but wanting, wanting, wanting ....


It is terrifying ... this idea of breaking the seal on my boxes of stored-away hope.

My heart has been broken so many times, in so many ways -- ways far more painful than anything autism could ever accomplish, which is saying something. And there are scars on my heart that will never heal, not completely.

But is there a chance that some day I still might hear my son's voice?

Do I dare to hope?

How can I not.

My heart still beats.
I still dream.
And I am always a mother.


  1. Hi Leah,
    Griffin goes to a PROMPT speech therapist once a week outside of school and it's been going well. I've heard incredible stories of kids responding to PROMPT who haven't responded to traditional therapies.
    FYI, at Griffin's ABA therapy school (before Journey), I met a 13-year-old boy who had suddenly started talking after 3 weeks of ABA. It happens. And hope does spring eternal.
    Hugs for you and for your boy! -- Holly

  2. Beautiful post. I will hope with you!!! :)

  3. this is so beautiful, leah. you speak my heart here:
    'My heart still beats.
    I still dream.
    And I am always a mother.'

    have you heard this song before?

    "But hope has a way of turning its face to you, just when you least expect. You walk in a room, you look out a window and something there leaves you breathless. You say to yourself, it's been a while since I felt this. But it feels like hope."

    love you. hoping with you, for you, for Olivia, for Daniel.

  4. One of my favorite lines is from a song in the film "The Prince of Egypt"....

    'Though hope is frail, it's hard to kill'.

    What a meaning that takes on when you have children like we have.

    Hugs to you and yours.