Monday, September 30, 2013

sweet signs of hope, indeed.


The essay I wrote after Evie's diagnosis was shared over at Where Did The Bird Go on Friday. Chelsea calls these stories "Sweet Signs of Hope." And although I'm proud of the words I wrote, and I DEEPLY meant them, I'm not sure that what I wrote really illustrates any of those sweet signs of hope I see in her. The words were written more from a place of denying and then accepting this new reality. Hurting, but also beginning to heal. It was an essay written about me, really. About being her Mother. But, this really isn't about me, it's about her. And there is so much more to say about her. There is so much more to explain. There is so much life in my little girl. Daily, hourly, she fills my heart with hope, and with pride. She is learning so quickly now, each day finding her way closer to where she needs to be. Its only been a few weeks since I wrote that essay and already I'm in a new place with my feelings about Evie's diagnosis. Already, there are SO many new signs of hope. I wanted to share some of them here.

(Disclaimer: I am slightly hesitant to share these. If you don't understand Autism it might be hard to understand the significance of these things, especially if you're comparing her to your typical child. I hope you'll understand that some of these things are miraculous feats for a 2.5 year old with Autism.)

-Evie sitting in her high chair eating a snack at Nana's house. My brother Scott, who no longer lives there, walks in. "Hi Evie!" he calls out to her. "Scott?" she says, smiling at him. She turns to me, "it's Scott?" she asks. "Yes! Yes, Evie! Scott! It's Scott! Good saying Scott!" I can't remember EVER trying to teach her his name.

-After being away from my kids for a 24 hour anniversary getaway with Greg we return to pick them up from their grandparents. I come inside the cabin and call out for Evie. She turns at the sound of my voice, a huge smile on her face and runs to give me a hug and a kiss. "Mommy!!!" she calls.

-At bedtime I ask her to please go get her blankie and bring it to mommy so we can go "nigh nigh." She runs to the next room, climbs on the couch to reach it, and comes toddling back dragging it behind her. "Nigh Nigh" she says, handing it to me. "Let's go nigh nigh."

-Looking at her picture book and labeling the items as we always do, but this time Evie points to every picture as she says it. "Snake, car, cat, frog, fish, dog, moo, baah, bear, ball, milk, baby, cake, outside, shoes..." Point, point, point. Are you seeing this, mommy? I see a ball, do you see it, too?

-Evie sitting on the couch when Nana gets home from church. "Hi Evie!" She calls out. "Nana!" Evie responds, as usual, but then a tiny little hand pops up and waves.

-Evie playing a little game of chase with Will. He crawls toward her and she runs away squealing with delight. After a little while, he turns around and begins to crawl away. "BAAAAABBY!!!" She yells at him sternly, clearly demanding he stay there with her.

-Evie asking me to "eat" for a "snack" or a drink of "milk." Requesting, with words, to "go outside, go downstairs, watch Mickey, go nigh night, get down, get out, put on her sleep sack, take off her shoes." Communicating all of these desires effectively when 3 months ago she would have not known how and simply cried instead.

-Evie, at family dinner, as we cut a birthday cake and sing "Happy Birthday to you"...I'm watching her as the rest of the family watches the birthday boy. A huge smile on her face, she wiggles and bounces to the song as we sing. Not knowing how to sing along, but wanting to be involved, she simply sings out "HAPPPY!!!! HAPPY!!" from her little position in the back, beaming with joy.

-During lunch I'm practicing the signs "more" and "all done" with the twins as we eat. Evie knew them too when she was their age, but lost them. "More, more!" I say as Nora taps her hands together for me. In the corner of my eye I see little Evie watching her, making the same sign, once again.

-Leaving the cabin, saying goodbye to grandma and grandpa. "Goodbye Evie!" Grandma says. But I know she probably won't respond (Even though she has close to 70 or 80 words now, and is verbal, hellos and goodbyes are among her biggest struggles). "Goodbye!" calls grandma. And miraculously comes a confident little "bye bye" from Evie Jane.

-Nora playing with a toy when Evie yanks it away. Nora starts to cry. "Evie," I say, "you have a turn with the toy and then you give it back to Nora. Okay, Evie's turn with the toy...now Nora's turn with the toy," I tell her. Immediately, she bends down and gives the toy back to her little sister.

-Evie sitting with me in the living room playing with the shape sorter. Each one she gets in elicits an enormous applause from me. "Good job, Evie Jane!" I cry! "Good putting the shapes in!" All day long, now, I am saying these things to her. She obeys me when I ask her to put something back: "good listening, Evie! Thank you for listening to Mommy!" She starts to run down the street but turns around when I call out to her: "Good listening!" I cry. She comes to me in my bedroom, communicates to me that she wants the ball on the shelf she cannot reach: "Good asking!" I say. All day long I am saying these things to her, and in her eyes, I see it. A spark, a shimmer, that recognition of pride for a job well done. She is speaking to me, I am hearing her, and we are finding our rhythm. At night I lay her down in her bed, "Goodnight, sweet girl," I say. "You were such a good girl today. Mommy loves you. Mommy is proud of you." She gives me a kiss and a little squeeze, and I can see in her eyes, she gets it.

Autism can sometimes feel like a great disconnect between you and your child. You are crying out, struggling to reach a child who does not want to be found. Losing Evie; that is what I feared most. I thought, if they told me that Evie had Autism, that's what would happen. I thought I would lose her.

But each day it is becoming more and more clear. I am not losing her, I am finding her. We are not struggling apart from one another,  we are constantly reaching out for one another, embracing in our struggle and in our understanding. So much of the frustration of this past year is beginning to fade away and I feel that I am seeing her clearly, once again.

"Mommy!!" She calls out to me upon my arrival, her eyes sparkling as she runs in for a kiss.

 Remember me? I'm the one who loves you.



4 comments:

  1. this is so great! Evie has such a bright future ahead.

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  2. You are such an amazing writer! Those are all great things she is doing and seriously AMAZING :) Keep up the good work Jess. You are a great mom and you have such a sweet family.

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  3. You hesitated to share those but it was a great learning experience for me to discover the things that are a big deal. I love that you are finding each other again.

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  4. Oh, I love this post so much! You both are amazing and we love you!

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thank you for your shout outs!