Saturday, March 30, 2013

An Adventure

I love stories. Always have, always will.

But my favorite stories are those about family. I love Little Women, the Little House books, and The Lion, the Witch, and the Wardrobe. While these stories have so much happening in them, the underlying importance of family is so evident.

Sometimes, though, I get a little too caught up in the families of literature, and find myself wishing that I had a sister like Beth. Or a big brother like Peter. I wish that my family put on plays together like the Marches. Or went on wonderful wardrobe adventures with the Pevensies. I wish that I was doing something momentous, something memorable, something worthwhile. I wish I was a hero.

That's the problem with wishing, though. As much as I want it, there simply is no wardrobe for me to go through and get to Narnia. I don't have a big brother named Peter. And my family isn't living in the Big Woods of Wisconsin. And I don't even have a trusty steed to ride into battle on (and that's ignoring the fact that I'm petrified of horses).

Deep down inside, though, I want an adventure. I want a sweeping, romantic, epic adventure that takes me far away from the humdrum of real life.

But the reality is that I'm living an adventure. Every day I wake up and never know what the next one holds. When I really think about it, I've had as many adventures as Lucy or Laura or Jo ever did.

We're not so different after all.

I didn't have to rescue my sister from falling through ice like Jo did Amy, but I have jumped into a slimy pond to save Evan.

I didn't have to watch at the door for wolves like Pa and Laura, but I have stood at the door to watch for floodwaters and tornados.

I haven't gone through a magical wardrobe to an enchanted world, but my world is already full of magic.

There's magic in the way Evan and I will joke back and forth. "Evan is so silly!" "NO! Tori silly!"

There's adventure in getting ready to go to college, in being a big sister, in getting up every morning.

I am the heroine of my own story.

The best part? Thanks to the dashing Prince, I already know there's a happy ending.






Wednesday, March 13, 2013

Perfectly


I could never understand why people wouldn't want a child with special needs.

Somewhere inside me, I always bore some resentment toward people who learned that their children had Down syndrome or other disabilities before they were born, and had a hard time still seeing that child as a gift.

It simply didn't make sense to me. As a family, we chose Levi and Evan. And I didn't understand why other people wouldn't choose children like them.

All of that changed when Levi was diagnosed with Autism Spectrum Disorder.

There had been signs, of course, but I had never explored the possibility of Levi having another diagnosis besides Down syndrome.

When I found out he had Autism, it sunk in quickly. It just felt right. I didn't deny it. How could I? It made sense.

But Autism is different from Down syndrome. I had come to terms with Down syndrome years before, and I truly believed with all of my heart that it was a blessing.

And I was an avid fighter for the perfection of kids with special needs.

God doesn't make mistakes, I argued. And if you truly believe that, then God didn't make a mistake creating a child with Down syndrome. Or Cerebral palsy. Or even Autism.

And I championed that wholeheartedly. I believed it. I owned it.

Until Levi was diagnosed with Autism.

Suddenly, special needs didn't seem so rosy and wonderful. Sometimes I got hit. Sometimes my hair got pulled. I got spit at almost every day. When I asked Levi a question, sometimes he wouldn't respond. And even when he did, he didn't often look me in the eyes.

Every day was a battle. Every day, a struggle. And I wondered to myself, Is Autism really a blessing?

Do I really believe that?

And for a while the answer was, No. It's hard to see the good side of Autism when you've got saliva in your hair, and your hand has teeth marks on it and your shirt is covered in cheese puff dust.

But I was focusing too much on the negative. About the things that Autism prevented Levi from doing. Or the things that made my life harder.

But there are things about Levi's Autism that I love.

For instance, the boy loves musicals. Especially Les Misérables. He knows every second of the three-hour 25th anniversary concert by heart because he's watched it so many times. Would he love Les Mis so much if he didn't have Autism?

I don't know.

I love taking walks outside with Levi, hearing him listen to the wind, and stop to examine sticks, and wave at all the dogs we pass. Would he be so meticulous about enjoying every little thing if he didn't have Autism?

I don't know.

Would his laugh be so contagious if he didn't have Down syndrome?

I don't know.

Would he still love to dance if he didn't have Down syndrome?

I don't know.

What I do know is that God formed him perfectly. Formed him in his mother's womb. Formed him with a plan to be in our family. A plan where he had Down syndrome. And Autism.

Levi is many things: sweet, musical, stubborn, silly...

A mistake is not one of them.



Wednesday, March 6, 2013

This blog post is so retarded.

Does my title make you uncomfortable? Does it offend you?

Perhaps not.

How about this one?

This blog post is so gay.

That one makes you bristle a little bit, doesn't it? I'll be the first to say that it's offensive, derogatory, and rude.

But why is it so disgusting, so blatantly offensive? Because it pokes fun at a people group. Because it uses their identity as something negative. As slang.

While everyone understands that throwing out the word "f-g" or "n-gg-r" is wholly and unarguably offensive, everyone from business professionals to sixth graders have no qualms about using the word retard.

This is biased. Rude. Bigoted.

Let me give you a brief history lesson on the word retard. Up until the 1960's, it was a legitimate medical diagnosis for unspecified intellectual disabilities. Since the sixties, the word has been used more and more as a slur or an insult, a way to call a situation or a person stupid. Nowadays, the terms "intellectually disabled" or "developmentally delayed" are more commonly used in the medical world. In fact, you hardly ever see someone with a diagnosis of "retarded" anymore. Why?

Because it's become offensive. Because the world has taken a word that was used politely and innocently as a diagnosis, and turned it into a slur. We've turned the diagnosis of someone who is intellectually disabled into a slur, into a way to make fun of others.

Do you know what words were used to diagnose people with special needs before "mentally retarded"?

Cretin.

Idiot.

Imbecile.

Moron.

And now retarded.

Every word that has been used to describe people with special needs, we've turned into an insult. Into another way to say stupid.

From this, we can discern that the words themselves are somewhat irrelevant. It's the attitude of society that's wrong. It won't matter what terms doctors come up with for diagnoses if the world continues to turn them into slurs.

If you look at someone with special needs, and all you think is stupid, then you are missing the mark. People with special needs are more than their diagnoses.

When I look at my brother and sister, I don't think stupid. I don't think retarded. I don't even think intellectually disabled. I think special. I think beautiful. I think full of life.

That's what "retarded" should mean. Not stupid.

The truth of the matter is that I can't tell people to stop thinking "stupid" when they think of the word "retarded." It's a cultural norm. And it is not likely to change.

What I can ask people to do is to stop using it, though. You know that old saying, "If you can't say anything nice, don't say anything at all"? I like to say, "If you can't use a word nicely, don't use it at all."

The world no longer has the choice or the ability to use the world "retard" nicely. Or "idiot". Or "moron." Or "cretin." They've simply taken on new meaning. But you can stop using them.

And you can still use words like "intellectually disabled," "developmentally delayed," or even "autistic" nicely.

Every word that comes out of your mouth is a decision. A decision to speak life or death. To speak nicely or rudely. To spread light or darkness.

Choose to speak light. To everyone.

And that means no more "r-word."

"Death and life are in the power of the tongue."
          - Proverbs 18:21a