Lily of the Valley

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My Sister’s Lily of the Valley, Spring 2013

Raising children is a lot like nurturing plants. You don’t truly know how the sunshine, water, and attention will help a plant grow, just like you don’t really know how love, affection and meeting a child’s needs will help them reach their potential. Yet we forge ahead, hoping that simply loving our children the best way we know how will some how be enough.

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Dmitri was understandably angry and anxious after he lost both of his parents, as any child would be. He had grown up hearing my voice, his far away Aunt on the telephone during my twice weekly calls to my sister. And I had grown used to hearing the only sound he made, which was a rhythmic and repeating Mmmmmmmmmmm sound. I knew he was nonverbal but I had no real inclination of what this meant until the summer I lived in Virginia before his dad succumbed to cancer. Being nonverbal does not mean being silent.

It took him a long time to grow to trust me although he knew immediately that I was his care giver. The first time he saw me after my sister passed from pneumonia he got a good look at my face and went to his room and cried. I can’t think of something that hurt me more, the fact that my mere presence and resemblance to his Mom would hurt him so. But time heals all wounds, or at least covers them up enough so that we can forge ahead.

When we first brought D home from Virginia he wouldn’t even look at the toys we offered him. His attention span was limited to about 5 seconds of tv watching and even that was out of the corner of his eye. He wouldn’t indicate yes or no nor did he have any way to share his needs or wants. The only power he had over his life was to sit down when he didn’t want to do something, and in the beginning this was often. Some days I would pick him up at least 10 or 11 times in a day. His sitting was like a digital switch. Either he was going to go along with what you needed to do that day, or he didn’t. This included activities that he wanted to do but for what ever reason when that switch was flipped, he was unable to participate.  He would drop himself on the ground and only a dead man’s lift was going to move him. Many mornings I would bodily carry him down the stairs to begin his day so he could go to school. This went on for the entire month we stayed in Virginia while awaiting our court date to settle his guardianship while I calmed my inner voice by telling myself I would do this every day if I had to, for the rest of his life.

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It wasn’t long after we brought him home to California that he started to expand his nonverbal vocabulary. The Mmmmmmmmmmmmmm eventually turned into Mmmmmmmmmaya. Having a child to play with has made such a difference in his life, and my daughter Maya embraced that role before we lost D’s dad. A few months before Ric died Maya took me aside and asked me if Dmitri was going to become her brother. She was four years old and I still don’t understand how she could comprehend such an adult matter when it was something I could barely comprehend myself.

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After we brought him home we forged on with incorporating Dmitri into our lives. I’ve always tried to treat him as a child at his age, rather than a child with Trisomy 21 and Autism. When we go to sit down restaurants, I show him the menu and ask him what he would like. It used to be he would randomly point to everything on the menu or exhibit absolutely no response at all. Eventually after plying him with enough chicken nuggets he learned to nod his head yes. “Dmitri, would you like chicken nuggets?” His response was a firm nod yes. Eventually he started shaking his head no and it’s all no all the time now in typical 11 year old fashion (even if the answer is really yes).

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But this weekend when I showed him the children’s menu and asked him what he wanted he did respond. He deliberately and carefully pointed first to a photo of a corn dog and then halfway down the menu to a photo of french fries.

Dmitri Finds His Voice

At the 6 second mark you can hear D say Maya.

I can’t begin to explain the joy that brought my heart. He is finally seeing past the veil of his autism and realizing that he has control over his environment. He is finding his voice. And for that I am proud. Every single difficult experience has brought us to this moment and I am grateful.

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About Michelle

Knitting Tin Hats since 2004.
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