Sunday, March 9, 2014

My Sister Doesn't Talk to Me

My sister, Caroline, hasn't talked to me in over thirty years. In fact, she's never talked to me. She was born with Down Syndrome, and at her birth, experts assured my parents that we could teach her to speak, read, and write. It would just take longer to teach her than it would to teach a normal child. Let me tell you, we tried our hardest, but my sister never learned to talk. Boy, were we ever judged! My sister couldn't even qualify for the Special Olympics.

As time went on, we discovered that Caroline had many traits in common with autistic children. At that time--the eighties--autism wasn't as common. Teachers and doctors were only just beginning to talk about it. When you look at my sister, you don't see autism; you see Down Syndrome. Thus, she was never diagnosed as autistic.

However, those of us who know Caroline best know that autism defines her life. She is obsessive in her interests, showing a definite preference for musicals and classical music. She frequently rocks back and forth. She prefers certain textures over others. And she doesn't usually enjoy close contact with other people--though she does have her own sense of humor.

Growing up with Caroline was always an adventure. Every time we went out in public, people watched.  They watched as she swam in our neighborhood pool, diving in and out of the water like a dolphin. They watched while my parents reminded Caroline to sit in her chair, not the floor, at restaurants. And while she threw her eyeglasses off of boats and bridges. And while she screamed on airplanes.

Now my sister lives in a group home with four other mentally disabled women. The caregivers there provide twenty-four-hour care for her. Her home is close enough to my parents that they can visit her as often as they like. Every Sunday, my parents bring her home to spend time with the family. When I visit, it's the same old story. Caroline sits rocking back and forth on the family room floor, listening to Mozart or watching a musical. Most of the time, when I try to hug her, she pushes me away.

Every autistic individual I know is different from every other. In some ways, autism defies categorization. When I started writing Sense and Sensibility: A Latter-day Tale (coming August 2014), I wanted to include a character like Caroline, so I created a little sister named Grace. She's a lot like my sister, only she talks. She loves musicals and swimming in rivers. And when she doesn't get her way, she sits down, refusing to move.

Grace is a minor character. My book isn't about autism. It's about a family. And, for me, being a part of a family involves loving each other despite our weaknesses. It's also a romance, and I have to tell you that for me, there's nothing more attractive than a man who's kind to disabled people. That's one of the important things my sister has taught me without saying a word.

4 comments:

  1. beautiful post. thanks for sharing. smiles!!

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  2. What a sweet post about your sister. I have heard you talk about her before, but I don't think I realized that she was autistic too. Excited for the new book . . .

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  3. In the next life, I see your sister embracing you, fiercely. I have always believed that people like your sister are the extraordinarily valiant spirits that Heavenly Father protects from the adversary by means of their challenges.

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  4. That was an extraordinary post. I'm sorry I never got to know Caroline...but I understand a lot more about her than I did before. Thanks for sharing. Much love to you and your family. -Tracey

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