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Shifting goals

January 30, 2012

Letting go doesn’t mean giving up, but rather accepting that there are things that cannot be.
— Anonymous

We must be willing to let go of the life we have planned,
so as to accept the life that is waiting for us.
Joseph Campbell

There’s an important difference between giving up and letting go.
Jessica Hatchigan

Last week, Mary’s teacher at the oral deaf school she attends, confirmed to me that they are making very little, if any, progress in getting her to speak. This school, that traditionally abhors the use of sign language among their students, believing that any child can be made to speak, advised me to continue using ASL (American Sign Language) and PECS (Picture Exchange Communication System) as Mary’s communication method. They will, of course, continue working with her, but this conversation came sort of as a confirmation of what they had been hinting at- that they may not be able to get her to speak.

Mary had been using ASL with us last fall. Then, she started speaking last winter, right on time, at 16 months. It was there. I absolutely appreciated and drank in those first precious signs and words. I had been cautioned that her speech would be delayed. It wasn’t. I was thrilled.

Then it disappeared.

She stopped signing.

She stopped waving.

She stopped talking.

My baby girl fell silent, and save for a couple of very spaced out instances (You can read about those here, and here.),she has not spoken since last March.

I have anguished over this. I have cried about it. I have written about it. I have yelled about it. I have sat silently watching her, knowing she’s in there, just waiting for her to show us. I have laughed over the ridiculousness of just wanting one word from her, when I know that there are so many times I want to tell my other children to “just please be quiet!”

Now, I realize I need to let go. I am letting go. I am letting go of the idea that I have any control over whether or not she will talk. I am letting go of the idea that she has any control over whether or not she will talk. I am letting go, once and for all, of the idea that she needs to speak in order to be understood. I am letting go. I am not giving up, but I am moving on.

For so long I have waited for her voice, but her silent form of communication is just as beautiful. She doesn’t point. She doesn’t sign. But she does touch. She rocks. She celebrates. She reaches. She hugs. She loves.

There is an elegance to this. There is beauty in her silence. There is love in her touch. There is a peaceful understanding here. A bond of love that comes from the unspoken language between us.

My daughter has taught me well: when the tongue is bound and eyes don’t seem to see and ears don’t seem to hear, love translates.

Autism mamas know the power of connection, we look for it in unlikely places. We know to cherish it, celebrate it, no matter how small.
~Jeneil at Autism in a Word

Jeneil writes about her daughter, Rhema. Her words are so poignant in part because they apply so easily to those of us with nonverbal children.

There is so much more than what simple words could explain in the smallest expressions of understanding from my daughter, such as the joyful slapping of her hands on my shoulders when she realizes that I do understand what she is trying to tell me; the celebratory hand flapping and rocking that come when she sees something that she really likes; the silence and stillness that come when her senses are completely overloaded; the quiet bumping of her forehead against mine in lieu of a kiss; the silent stroking of the skin on my arm when she needs to be soothed. She tells me more in these moments than any verbal child could possibly communicate with words.

I am even amazed at myself. There was a part of me that feared having this conversation with Mary’s teacher. I feared somehow that hearing a professional express real doubt on whether I would ever hear Mary speak would somehow make it more real. Final. That it would send me into a tailspin of despair. Instead, the words washed over me with a strange sense of relief. An answer, finally. A confirmation that we have been doing the right thing by her. That she wasn’t not talking just because we weren’t working hard enough on it.

So, no, I am not giving up on her speech. But I am letting go of the obsessive need for it. Instead of focusing everything I have on getting her to do the thing that she is not yet able to, I will promise myself (and her) that I will focus on the joy of just being with her, and absorbing all that she has to show me. She is teaching me so much, just by being. I will enjoy her just as she is, and if need be, I will be her voice.

Don’t give up
Because you want to be heard
If silence keeps you
I…I will break it for you

Everybody wants to be understood
Well I can hear you
Everybody wants to be loved
Don’t give up
Because you are loved
~ Josh Groban

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4 Comments leave one →
  1. rhemashope permalink
    February 1, 2012 4:14 am

    this is the first i’ve read of you and Mary, but i am so drawn to you both through your beautiful words here. i can truly relate to the longings of your heart and also to the joy you take in your girl, just as she is.

    i’m glad to “find” you here in the blogosphere.

  2. Jackie permalink
    February 1, 2012 4:39 am

    I am facing the same fear right this moment. The fear of loosing what little communication abilites Adam had. We have been in the hospital for a month now and I’ve heard words like Cortical Dysplasia, and Ensepholopathy.
    All he does is look around in a daze, it’s like he’s not really there. One thing I keep thinking is, what if God was teasing me with all the progress he was making? What if he doesn’t come out of this? What if there’s brain damage- more than he has already endured? ?How could this happen? Then I… Like you try to remind myself I must be willing to let go in order to embrace him as his true self and that no matter what LOVE TRANSLATES… ( you might see that on one of my posts in the future 😉 don’t worry I quote you properly that time.

    • February 1, 2012 4:44 am

      Oh Jackie, he’s in there. And he knows his mama’s right there by his side. I can’t imagine what you must be going through right now. We’ll keep praying.
      Hugs.

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