A face and a name

Yes, a detailed post about my 1/2 marathon experience this weekend is coming, but that kind of brilliance takes awhile. And on this last day of April, Autism Awareness month, I thought I’d write about a topic near and dear to my heart: autism.

That’s because within the last year, my nephew was being diagnosed as being on the autism scale. And in that moment, autism became more than a word to me, a diagnosis that happens to other people. It had a name and a face. My nephew’s.

Before that, autism had been defined by the kids my mom had taught who had been diagnosed with it. I watched from afar, probably a bit disinterested, maybe a little secretly glad that I wasn’t the parent, aunt, or teacher of a child with autism.

But things change. When my nephew was born, I was ecstatic. I first saw him the day he came home from the hospital, having been in Nashville on the Wednesday night he was born. There’s a picture of that moment somewhere. I’m beaming. He’s tiny and sleeping in my arms. I’d just whispered to him that he was my gift from God. He was perfect. He was beautiful.

He still is.

When my nephew turned 2 years old and still wasn’t really talking, we got a little worried. Boys can lag behind girls, we reasoned. Every child develops at his or her own pace, we said.

But still he didn’t talk. He’d make jabbering noises. He sometimes said Mama and Dada, but not always. And if you watched him with a group of children, you’d notice him off to the side, completely off in his own world, playing with his own toys, oblivious to the other children until they interrupted his play. Then, he’d shove and hit, and return to the activity, usually something that involved a lot of repetition.

So his parents had his hearing tested. They took him to St. Louis for more tests. And in the end, the consensus was that he was on the autism scale.

Autism isn’t a clear-cut diagnosis. Instead, there’s a scale and if a person has enough of the factors on it, they’re said to be on the scale. My nephew is thought to be on the high-functioning end and by all accounts, appears to be a pretty smart little kid.

But the diagnosis stung a bit. I cried the night my brother told me. Not because I thought autism was a dreaded disease or the end of the world, but because the knowledge hit home that my nephew’s life sometimes be harder than I wanted it to be. He’d be different; the “quirky” kid. He might get made fun of. And if he was like anyone in the personal accounts of autism I had read, he might have trouble knowing and acknowledging that he was loved.

I cried because I wanted a beautiful, easy life for my nephew where he never had to bear any hardships. I cried because I didn’t want him to feel alone or to not know that he was deeply loved. I cried because I was scared that autism might make it harder for him to come to Christ and accept that love.

But he is wonderfully and fearfully made. And he is perfect, just the way God made him. And the God of all wonders knew what he was doing when He knit my nephew together in his mother’s womb. So then I prayed that God’s glory would be on display in my nephew’s life and this diagnosis.

And my nephew is a great little man these days. He’ll be 4 this year, and he’s full of energy and has a deep belly laugh that makes me smile to just think about it. He’s talking more; he can recognize the letters of his name and knows the word Jell-O by sight (he REALLY likes pudding). When he slips his little hand in mine and pulls me down the hallway at my parents’ house to the room that used to be my brother’s, I can’t wipe the smile off my face. Because my nephew is my gift from God, and I love him so much. He has his Aunt Mandy wrapped around his little finger.

If I could act as my nephew’s shield throughout his life, I would. I’d deflect every hurtful comment and clear any roadbumps that popped up along his journey. I’d fight his fights and carry his burdens and make life as easy and beautiful as I could. But I can’t do that. And I don’t guess I really want to.

My prayer for my nephew is pretty simple these days. I want him to be kind like his father and granddad. I want him to love God with all his heart, all his mind, all his heart, and all his strength. I want him to know that a diagnosis does not define him. I want him to know that he is fearfully and wonderfully made, created on purpose by God. I want him to know that he is loved completely and unconditionally. I want him to be a man of character. I want God’s very best for him.

And I wouldn’t be a good aunt if I didn’t!

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2 thoughts on “A face and a name”

  1. I couldn’t have said it better. I really enjoyed this quote: “I want him to know a diagnosis does not define him”. Amen! I tell that to all the parents of children that I work with in therapy…this doesn’t define them, it’s just a part of who they are. I don’t look at that child and think “autism”, I think “NAME”.

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