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September 16, 2010 / paperkids

Being there

This past weekend I went away  and my awesome husband watched the kids.  This wasn’t the first time I’ve taken a little trip away and usually everything is fine.  This time when I came back, it was harder to get back into the “groove” with Emma.  I came home so ready to communicate with her and eager to read what she would spell out for me.  She still has a pretty hard time typing for Jared – like I said, it’s a zone that we get into together.

In times like this, when it’s more difficult for her, it’s hard for me not to feel nervous.  I know that I’ve mentioned it before, but I struggle with the fear of not wanting it all to end.  I try to stay conscious of  that balance.  I kept asking questions and grabbing her arm and it seemed very slow going.

Me:  Did you miss me?

Emma:  yes

As I was  bombarding her with questions, it seemed like I just couldn’t find the zone.  Where had it gone?  When would we find it again?  I was feeling anxious.  She wasn’t really able to type out much.

Me:  “Are you having a hard time communicating?”

Emma:  yes

Thank God for a simple yes.  I remember how many years I longed to get that small word from Emma because with it, you can discover so much of what you’d need to know.

As it is, whenever I’ve gone away, I always feel moved to make up for lost time somehow.  I kept trying to get more typing out of her, but it was hard.  I knew I should expect this from time to time.  We all have our moments and I try so hard to remember it, but my fear feeling mixes with sadness for her.   I clapped my hands and happily tried to motivate Emma to work on her typing practice.  I felt my desperation and I know she did too.  At the computer, she  struggled and got upset.  I knew we were done almost as soon as we started.

Me:  “Do you want to stop doing this for now?”

Emma:  Yes

Later, when we were all outside and all was calm, I came up to her with the paper keyboard.

Me:  “Are you mad at me, Emma?”

Emma:  I realize that you are ready for me to type independently

I was a little relieved because this was definitely a clear sentence.  And what she said really touched me.   I knew that she had felt every bit of my panic and desperation along with her own disappointment in herself.  I knew that it was my opportunity to clear the air for both of us.  I really looked at her.

Me:  “Emma, if you want to, you can type this way on this paper keyboard forever, okay?  I just want to be there.  I just want you to be happy and be able to tell me what you want to tell me.”

And as soon as I said it, I had to hold back the tears because it just felt right to say it – to let her know what maybe I really hadn’t before – and hope that it really seeped into both of us.   I know that we’ll hit some bumps in the road and maybe not everyone will always believe what Emma “says” with her fingertips.  That idea terrifies me – it fills me with anxiety.  Sometimes I get caught up in how things “are supposed to go” on this journey we’re on.  I start to wonder: What will others think? Seriously, I should know better!   I can’t lose sight that  the best and only thing I can really do is just be there for her – holding her  hand or arm for the rest of our lives if need be.  I don’t think she’ll need the crutch of my grasp always. Maybe instead of wanting to rush things along, I should enjoy this very magical time between us when I am blessed with her beautiful words as they flow from her heart to mine.

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6 Comments

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  1. Lynn States / Sep 16 2010 10:27 pm

    Fear is such a powerful force that we all seem to have to face throughout our life. It is a blessing to be able to recognize it and to move forward despite its presence. The one thing that conquers the fear, Sabra, is love itself. And this is a perfect example of that kind of love.

  2. Grandma / Sep 17 2010 3:10 am

    “Welcome back!”; that’s what we want them – our loved ones – to say when we go somewhere. Whenever I went somewhere without “my boys” – one of whom is now Emma’s dad and your awesome husband – I felt guilty. Whenever they and I were separated or cut off from our routine, there was always what I called “re-entry” syndrome. Things are jarred a bit from their moorings. Life is like that – witness two mothers who live far away and yet find a way to be close through these communications because we love you dearly.
    Whenever I used to have to stand in front of someone I got “performance” anxiety. I always fumbled when I was in the spotlight. It is good that you are letting Emma know this isn’t about “performance,” but rather sharing the love between you. I think you are doing it just right. Hold steady, be yourselves. Like Lynn said, Love shows the way. xo

  3. Melissa / Sep 17 2010 3:41 am

    I look forward to your entries each day! Emma amazes me with her ability to communicate her thoughts….she has a gift…I know many adults who cannot adequately express themselves verbally or in writing…and wisdom and insight seem to just flow out of Emma’s fingers.

    Thank you for sharing your lives!

    • paperkids / Sep 20 2010 6:27 am

      Thanks so much, Melissa! That means a lot.

  4. Carrie / Sep 18 2010 12:02 am

    Hi – I am Christy Z’s mom and Masey’s grandmom. Christy’s younger sister Alee is also autistic. She is very high functioning at this point in her life. There were many times though I thought I would never see her progress and grow. Especially because at the time Alee was diagnosed doctors, psychologists and educators didn’t have a clue what autism was let alone how to work with an autistic child. Only through our perseverance and Alee’s hard work, we always knew she was trying to breakthrough her autism, did she finally turn a huge corner towards self expression and a life she could call her own. When we finally reached the point where I was less and less involved in her moment to moment successes and she was making her own visible strides toward her success I suddenly felt left behind. It was a sad realization that she didn’t need me in “that” way anymore. It was not to long after that realization though that I saw she needed me in other ways.

    Even as an adult with autism, Alee still needs support and prompting. Support of fulfilling her dreams. She is working on becoming an animator. Her dreams is to work for Disney Animation Studios. Alee’s life has come full circle because one of the ways that Alee sought out to teach us how to communicated with her was through Disney’s “Little Mermaid”.

    There is always light at the end of the tunnel. As I was traveling down what seemed the darkest of tunnels I had to keep telling myself that it was just so small I couldn’t see it yet. Boy, when it came into view it was like a train coming at me with a wealth of possibilities.

    I have come to realized too these kids are here to teach all of us how to be the best human beings we can be. Thank you for your blogging. It helps so much.

    Carrie

    • paperkids / Sep 20 2010 10:55 pm

      Thanks so much for sharing, Carrie! It is so inspiring to hear about the things that Alee is doing and get a sense of the possibilities. I wish we could’ve met you guys. Maybe in the future. Thank you for your kind and encouraging words. I couldn’t agree more with you:)

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