Skip to content
August 16, 2010 / paperkids

Independence tomorrow

 

Emma:  I want to type as you do

I  have been having Emma come to the keyboard on the computer for typing practice to work on trying to have her type independently.   As soon as I let go of her hand, it falters and she begins to hit random keys.   I can feel her frustration.

 I think about where we were two months ago and that jaw-dropping moment when we finally made contact with each other.   We had reached each other across the complex and mysterious sea of communication.  I see her upset now from time to time, so frustrated that it doesn’t seem  enough somehow.  That she wants to type as I do. I can only imagine what she must feel inside. 

And here I am, pounding  away on the keys as easily as breathing. I could feel the exclamation in her sentence.  She was angry. 

Me:  “I’ve been typing like this for a long time!  You can’t expect to type like this when you just started.  You  just started.  And you can’t get better unless you practice, right?”

I could hear the  confidence in my voice, but inside I felt the gravity of her disappointment.  Now that she had a means to finally “talk”, her method is slow and painstaking. 

I watched Carly Fleishman’s video recently on her website  and saw  the effort that went into her typing.   It seemed at times tedious for her,  interrupted by her sensory system.  Even Tito still sometimes needs the help of  his mother for a little support in writing, prompting him to sit or get his paper.   I think of all the  obstacles that these children and adults have to overcome for a simple slice of humanity.   Basic skills like washing hands, using a fork, sitting in a chair, and so on and so on, can take years to accomplish.  Now that Emma had accomplished maybe the most significant goal she’d had for herself -communication – she still needed me.

I have to admit that I felt nervous this year about sending her to school.  Even though I knew the teacher would be amazing and the class the perfect environment for her, she would be away from me and away from her ability to communicate with anyone.  She won’t spell for anyone, but me, with the exception of a “yes” and “no”.  There have been times, where I wondered how it might appear from an outside perspective.  It seems like everyone always has expectations and I have been worried that because she still needed me, others wouldn’t take it seriously.  I worried for her feelings.  I couldn’t bare the thought of it. 

But then I began to think of the last chapter in Tito Mukhopadhyay’s book  How Can I Talk if My Lips Don’t Move, titled Final Words.  It’s STILL hard for me to read that chapter without crying my eyes out because of the painful and beautiful honesty and truth of  it  on the subject of independence. He, himself, being non-verbal, affected with severe autism his whole life, had found a means by which to communicate through writing, with the help of his mother.  He writes about how he is often asked about whether he will live independently at some point in his life.   He contemplates:

I may achieve a goal, and I may look forward to achieving others, perhaps till the last day of my life.  I may rejoice in some moments, and I may wish some moments away in the process of working toward my goals.  While I work, there will be people around me, either to help me or not to help me,to judge me or not to judge me, to care about me or not to care about me, while I walk on the pathway of time through darkness and shade or light and it’s reflections.

Talking about independence makes me wonder, Who is truly independent in this world?  A farmer who grows his food is dependent on a baker, a barber, a doctor  and so on ……

How independent would I be? I might ask “How independent is he, or she, or that man on the street?”  Even the universe is not independent of any of those laws that bind it together. 

–  taken from Tito Mukhopadyay (How Can I Talk If My Lips Don’t Move)

         I could quote this whole book…and I may end up doing just that throughout these entries.   It was a powerful message for me about the nature of our independence.   It made me think  “Are any of us really doing it alone?”.   Maybe it’s okay to rely on, and in turn, be there for one another.  Isn’t that what love is?

I have now begun to look at myself as a translator for Emma, an  interpreter.   Now Emma needs me to help her with this particular skill, but soon she will be moving on to another.   And I think she is teaching me way more than I am teaching her. 

I told Emma about this post and read again this beautiful excerpt from Tito, whom she adores.  I asked her what her thoughts were about independence.

Emma:  I am trying to reach independence in my typing

Me:  “Do you believe it will happen?”

Emma:  yes

Me:  Can you think of a name we could call this entry?

Emma:  Independence tomorrow

Had to use it!!!!

Advertisements

7 Comments

Leave a Comment
  1. Rita / Aug 16 2010 3:52 pm

    Oh my gosh how I love hearing the interactions of you and Emma! I am learning so much about how selfish we can be in our little worlds. It makes my struggles seem so small when in reality it puts them in perspective. I love reading your blogs and look forward to them in my day. Rich food to chew on. God has blessed us with you Emma and family! Sabra thank you for this and I know that this is just a beginning for your family so hold on and stay as simple as you can. God is your provider!

    • smurphy3 / Aug 19 2010 3:22 am

      Thank you Rita! God has blessed me more than words could ever say. And these comments just keep it going for me. It’s just been incredible. He is good!

  2. Molly / Aug 16 2010 7:01 pm

    “Independance tomorrow” is both hope and fayth mixed together !!! And thats a good thing, well, its a great thing i mean!

    Do u remember the patient song? hum?
    “Be patient, be patient, dont be in such a hurry, when we get inpatient we only start to worry, remember, remember that God is patient too, so…( I forgot the rest,) – hehehe.

    ps, try and let her just play on the keyboard without it being a task, just for fun to get used to it and let patience have her perfect work.

    So much love, Molly

  3. Molly / Aug 16 2010 7:06 pm

    pss. You too look like twins in this picture : )

  4. Lynn States / Aug 16 2010 11:39 pm

    Strive to be patient with yourself, Emma. Constantcy will help your confidence, I promise. And, Sabra, I am continually blessed by your perspective in all of this and appreciate your sharing.

  5. gloria cassidy / Aug 18 2010 5:35 am

    Sabra,
    I agree with your mom. I too am blessed by your perspective. Write more! It is not just the Emma/miracle part of “Paper Kids” that draws me daily. It is the vunerablitiy, strength, wonder and honesty of your prose that allows me to participate with this miracle.
    I have been quoting the “universe” dependency quote to my self and others.
    Now I will write down in my little quote memos a Sabra love quote.
    “Maybe it’s okay to rely on, and in turn, be there for one another. Isn’t that what love is?” Sabra Murphy
    Now that makes me cry.
    Emma I believe that you will achieve your goal to type. You have accomplished so much already. You are very good at learning and I am confident that you will be able to train your hands to do what you want them to.
    Love you

    • smurphy3 / Aug 19 2010 3:21 am

      Love quotes?! I love that. And I love you. You are so much a part of this whole journey, Gloria. Such an inspiration to us all.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: