Count Down to World Autism Awareness Day

Below is from my old blog. It is a post from 2008 on World Autism Awareness Day. As we are approaching 2012 WAA Day, I thought it would be nice to share this sweet memory.

Autism Awareness Day 2008: A Post for Madelyn
Madelyn was born on September 3, 1997.
She was diagnosed with a Pervasive Developmental Disorder-NOS in December, 2000.
On June 28, 2007, she was diagnosed with Isodicentric chromosome 15 & Autism Spectrum Disorder.

I want to share one of my most precious moments with my daughter to honor her and all the other sons and daughters who triumph through autism everyday.

Jim and I use to take turns dropping the kids off at school and picking them up. This year they starting riding the bus together. I'm blessed with this wonderful memory from that time we spent together in the morning. The routine of the morning was to drive Ethan to his school first, then drive a few miles over to Madelyn's school. We'd pile into the car, Ethan chatting up a storm. He'd tell me stories about the dream he had the night before or what he was going to do on the playground later. Madelyn would usually just sit in the backseat making occasional noises and repeating her favorite knock knock joke (knock knock, who's there, banana, banana who, banana peel, hehehe). I know it's not very funny, but it brings her comfort several times a day. It also gives her a way to interact with people and feel connected.

I'd drop Ethan off and he'd say "Bye, Mom, Love you, see you later!" then he'd run like lightening to catch up with his friends getting off the bus. At that moment, I would turn on a CD of Disney princess' low in the background and make my way towards Madelyn's school. I began this habit of sliding my hand behind me on the backseat beside her leg. She sits directly behind me so it wasn't very comfortable, but I wanted to reach out. I wanted to show her love in an unobtrusive way. So, every morning I'd gently slide my hand back there palm up. At first she would push it away or hit it with her knee. Then, after a few days she would try placing her hand on top of mine. Several times she would place it there, then quickly move it away. I could feel the anxiety running through her arm. I couldn't see her, only hear, feel, and sense her. After a couple weeks she was able to lay her hand on top of mine for most of the short drive. On days she was really struggling, I may only get a quick pat, then she would just let it sit there. This was our ritual. This was how we communicated. In her way, she was telling me about her night, her morning, and her attitude toward the day.

One day (etched forever in my mind), she was having a particularly tough morning. She had several OCD mannerisms that had us running quite late for school. I dropped Ethan off, then slowly slid my hand behind me. I was half expecting a swift knee hit. However, she roughly tried to hold my hand about 3 times. I felt her trembling. I could almost feel the internal battle between her heart, her head, and her body. After the third attempt, I heard a soft voice behind me, "Mommy, I love you too." I drove silently with tears streaming down my face. It was an unexpected gift to hear the words we'd been expressing through ritual for weeks.

God bless your day! Remember, you never know what you might get just by reaching out...and waiting...
Posted by Gretchen at 7:15 AM