Monday, April 14, 2014

The Face of Autism

The first time my parents placed my first baby sister into my arms, I knew I had found perfection. At 7 years old, nothing had ever quite delighted my heart the way she did. She was everything I had asked for and more. My baby.

As a baby, she was strong, smart and resilient. She hit milestones like no other. We flourished with her, cheering on her every move. Baby's first word, first steps, first sentences. I guess I didn't notice much back then, because in my eyes, she was perfect. Everything she did was mesmerizing. But looking back at videos now, I can see the change. I can see what my parents started noticing. regression.

Our beautiful toddler wasn't talking as much as she was 6 months ago. Where did her sentences go? Why isn't she making eye contact? Why does she get upset when you tickle her? It used to make her giggle. The diagnosis was Autism. A neurological disorder that would keep her from communicating with us as effectively as you and I could communicate with each other. Neurons misfiring in her brain keep her from talking to us in sentences, they keep her from being able to focus on her present environment for too long and they cause impulses that result in self-injurious or injurious behaviors.

My parents were devastated. Even on antidepressants, my stepmother experienced more grief than I imaged possible, considering her baby girl was alive and healthy. Her baby girl would never graduate high school, walk down the isle, she would never go to college or have children. Her baby girl would never be the person she imaged her to be. That must have been really difficult for them. All the things my sister would never get to do or experience. All the extra financial and physical help my sister would require for the remainder of her life. I suppose that's a heavy burden on any parent.

But I was no parent. I was big sister extraordinaire. Throughout her childhood, I was often the only person who could console her when upset, deal with her when she was having tantrums, put her to sleep when she fought it. Every day I was filled with more love and patience towards this beautiful girl. While my parents fought against her disorder, investing money and hope into every therapy imaginable, I just spent my time loving her. To me, she wasn't broken. She was still the same baby sister I had always known. She struggled against every limitation she had just to say "I love you too," when you told her you loved her. Her laughter was still loud and full of life. And in the moments when her disorder wasn't causing her to be upset or short-tempered, she was still the mischievous, mess-making, giggling girl I had always known her to be. She was still perfect.

I can look back now and see that while my parents always tried doing what was best for her (moving across the country for a great school, expensive therapies, endless attempts at finding the right combination of medicines,) there's a reason I connected with her so strongly. There's a reason why I was often the one who was most able to provide her daily care-giving. Because God gave me the greatest gift a big sister could ask for in that situation. Endless amounts of love and patience every single day, to fiercely love and protect her. No matter how hard it was. No matter how tired I was. No matter how bad of a day she was having. No matter how much she physically hurt me or herself. He gave me what she needed from me.

And despite everything that is "wrong" with her, still... She is the most beautiful reflection of God I have ever experienced. Stroking her hair until she falls asleep, laughing in the backseat of my car, even when she cries and my heart breaks; I have never experienced a stronger connection with God than when I feel so fiercely full of love and protection towards her.

There's a quote from an old 2000's teen show called "Roswell" that I think says it best.
      "Maybe, you can't heal somebody with Autism because there isn't anything wrong with them. You can't fix him because there's nothing to fix. He's just different than you."

Meet Kyra.

Throughout the month of April I will be sharing more pictures from this family photo session, more about Kyra, more about Autism and more about life with somebody whose special needs (including a fun post having professional photos take with a special needs loved one.) You guys have of course, already met my youngest little sister, Kendra. (Who turned 16 today! YAH!) I figured it was about time I formally introduced you to Kyra. The reason I studied psychology in college, the reason I love special needs children so much, and the reason I've worked so hard to become a  responsible, kind and loving woman. Kyra.

There are lots more gorgeous photos from our amazing sister session with Emma Cowart Photography last month. But I want to save some for the rest of my Autism-related posts this month. Today, I'm sharing three that mean quite a bit to me.

Photograph one- she truly is the reflection of beauty and perfection.
Photograph two- the special connection we share.
Photograph three- towards the end of the shoot, she was tired and just done. In true fashion, she laid in our laps and wanted us to itch her back. Since I left for college a few years ago, Kendra has really stepped up to be more than just Kyra's little sister, but to become more of a bigger sister and help fulfill a lot of Kyra's wants and needs.

April is National Autism Awareness Month! Share and comment on how Autism has impacted your life! I love hearing all of your stories! Until next time...


Ps. Kyra is pronounced (Kie-rah)


Hello gorgeous, I love reading your comments!