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July 23, 2010 / paperkids

What’s in a name?

A few days ago, I asked Emma if she wanted to help me start a blog to share her thoughts.  I’ve been wanting to do this for a while, but being the completely scattered, totally unorganized, not to mention the huge procrastinator that I am, once again I lag way behind.  Did I mention PC challenged? (that’s right, wish I could say MAC) .    I told her that not only would this be a great way to keep track of all the new things we are learning together through her new communication method, but it would also be a way for her to express herself and make a difference in someone’s life.   Emma had told me she wanted to be a teacher – I told her she could start now!  Learning more about autism is exactly what us parents are in search of…and we need more education concerning our non-verbal population.  Thank God for Tito and Carly!!  They have changed my whole perception of autism and given me the greatest gift I could’ve hoped for and then some – hope. 

So I asked Emma:  “What do you think about ‘Spectrum of love” – okay, it’s a little cheesy.    “Got any ideas, Emma?”

She typed “Paper kids out of time”.   –  Whoa!!  “What do you mean, paper kids?  Like this paper keyboard..the way you communicate?” 

Emma:  Yes

“What do you mean by “out of time”?  — it took a few tries to get her to complete the question about what this meant and the answer really floored me: 

“I mean that I think I’m too old to talk” 

My heart sank a little.  Now, I know all about this theory,  and God only knows she’s probably heard it a million times.  Kids beyond the age of five rarely learn to talk.  There’s some kind of theory about brain hardening..like a window and once it shuts, THAT’S IT!   It serves to torture us parents with non-verbal children.  Well, I just don’t know if I believe this.  This thought had made me sad, feeling like the clock is winding down…running out of time.   I decided long ago, not to dwell on the idea…and what do professionals know anyway?  Not much about autism, since most non-verbal autistics get the big MR (mental retardation) diagnosis.  Now I know that it’s BS!  But what struck me is how sure Emma feels about this.  She is so sure she will never talk, having mentioned it many times.  What can I say, but to just encourage her?   I could never know what she deals with or has gone through.   I just have to tell her that anything is possible with faith hope and, above all, LOVE.  Miracles can happen dammit!!  So I will keep praying for her great desire to talk.

But even so, having a way to communicate with the world through the keyboard has given her so much in just one month.  But that’s for another post. 

So, here we are: Paper kids.  I tried to lighten the mood by offering a more uplifting  title “What about Emma’s World??”. 

…but in the end, it should be Paper Kids, because, let’s face it, it’s a way cool title, but most of all because Emma said so.

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13 Comments

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  1. Candy / Jul 24 2010 4:11 am

    Emma is a beautiful and bright little girl. She will continue to surprise us with her thoughts, words of wisdom, and intelligence!

  2. Katie Cameron / Jul 24 2010 7:14 am

    First: Congrats on the blog. I continue to be in awe that I was gifted you as a friend.
    Second: Emma IS talking. Don’t you forget that and don’t let her. Cheyanne signed for the first 5 years of her life, not because it was in style (no offense to those parents) but because she was deaf. That was talking too.
    and
    Third: Miracles happen daily, we just choose to ignore them. Emma picked you for a reason and she chose wisely. If anyone can effect a miracle for her you can Sabra. In fact, you already have.

  3. Amanda Miller / Jul 24 2010 11:48 am

    Sabra – what a truly amazing and gifted daughter you have! I am looking forward to learning more about her as you blog 🙂

  4. karen / Jul 24 2010 2:30 pm

    Dearest Emma, you are bright and caring…the two main ingredients for a good teacher. I think you will reach your goal one day! I am a teacher, and I can tell you this…listening is far more important than talking when working with kids. Don’t let yourself become discouraged over not being able to talk yet, sweetie. You are young, I am sure you have plenty of time. You communicate well in other ways, and that is what matters. Besides, there are so many non-hearing/non-verbal children out there, just wishing for a teacher who understands! You will be a blessing to them, as you are to all of us. Keep working, girl, you are growing just fine, just as you are meant to grow. 🙂

  5. Christine / Jul 24 2010 8:37 pm

    I cannot wait to learn more about Emma. Sabra, you have done a great thing by starting this blog.

  6. Renee / Jul 24 2010 11:33 pm

    Love that you are doing this…I really need to get you all the pics I have of her on disc – I keep forgetting!!! lol
    Great job, and looking forward to reading more and more. xoxo

  7. Grandpa / Jul 25 2010 4:04 am

    To my wonderful Daughter and her husband , my Son. And of course to my Beautiful super Granddaughter. Emma Grandpa is so proud of you for reaching out to us , I love you so much and think of you every day. Now I know that we have had a special relationship all along and I was unaware. I could feel your love and see it in your eyes. YOu are so very very special. Like your Mom I am over the Moon. I have so much more to smile about now.. Love GrandPa

  8. Heather / Jul 25 2010 2:52 pm

    I am thrilled to have the opportunity to get to know your amazing family! Our family is also blessed by autism. What a journey! I look forward to reading more about your journey. Emma, ALL things are possible. Never believe any differently =}

  9. gloria cassidy / Jul 26 2010 9:29 am

    This is wonderful Sabra. My heart swells with the love I feel for you and your family. I have always believed that Emma is brilliant and gifted. I’m so proud of you for starting this blog.
    Emma, Thank you so much for talking to us. I love your ideas. I love the way you put your ideas together. I think you are a true artist perhaps a poet.
    When you were very little you walked over to me and touched me with your head. Your head rested on my leg for a few seconds then you looked up at me and walked away. I felt so important and happy. I have always felt blessed by that moment. You are wonderful you just the way you are with or without a talking voice. It is thrilling to hear what is in your mind as you paper talk.
    I still love your Emma words…especially “tug-eeee”

  10. Grandma / Jul 28 2010 2:10 am

    My beloved granddaughter: Grandma made it home and wanted to share my thoughts the minute I got back to Albuquerque. I so loved watching you sit with your beautiful mother and share your thoughts by pointing to those letters. I loved hearing the softening in your mom and dad’s voices, I loved seeing it in their faces as they now experience the deepening understanding of you.
    I have always known that you had thoughts, for you would look at me with those enormous thoughtful eyes and look upward as if trying to fetch a thought and deliver it to us, somehow. We continued to talk to you knowing that you are there, and that you are a special one sent to us to help us to learn to love in different ways. I hope we are always worthy of this beauty, and I give thanks for all you are teaching us. Much love to you and to your brother, and to your aunt and uncle and cousins and friends who share in this journey. My girl, did you know you have a special place inside you? It’s a gift and it’s right there in your heart. And we are all feeling brighter today because you have shared it.
    Much love,
    Grandma

  11. Angie Fillingim / Jul 31 2010 12:41 am

    Sabra I love the blog,Emma is A beautiful girl. You inspire me !! Hope you and Emma keep up the blog.

  12. Eric Shea / Jul 31 2010 1:18 am

    Emma and Sabra,

    I continue to feel chills each time I read and learn more about Emma. Being a teacher is something that I take seriously and I find your experiences fascinating, uplifting, and a great education for someone like me who is completely ignorant about autism and the people that are affected by this condition. Holly and I will continue to keep up with your beautiful family through this great idea with an even greater and meaningful title.

  13. Cara / Nov 3 2010 5:40 pm

    What a beautiful post, Emma, I can’t wait to read more of your words.

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