Monday, August 1, 2011

the beginning


It started when Kyrie was around 2 years old. Even as a first time mom, something just wasn't right. Where other toddlers were jabbering away, we were still waiting for her first word. The pediatrician reassured us that she was a preemie and speech issues were normal, but referred us to an early intervention program. She learned a few signs, and we got her first word. A year later she transitioned into the local school district. She went to two full years of Preschool, complete with speech and occupational therapy. According to their evaluations she had a "speech delay" and she would "most likely outgrow it."

Then came Kindergarten. I think it was her first week there that I finally admitted to myself that I didn't believe them. Her inability to relate to her peers, the emotional outbursts, her inability to run like a normal kid... this wasn't a simple speech delay.

I brought up my concerns to the school. The look on her teacher's face spoke volumes... we were on the same page. Autism. I wanted to deny it. I tried to talk myself out of believing it. In fact I couldn't even bring myself to get the official testing done. The school year was a roller coaster ride. She gained skills, she lost skills, she had kids refuse to be her friend, and she found one who understood. I forced the word Autism out of our lives.

It happened on a regular summer day as I was trying to help her complete a little review sheet of her letters. "I stupid! I dumb! I can't do it!" she screamed. My heart broke. Right then I decided I was going to proactively do whatever I could do help her, starting with an official diagnosis. I scoured the internet, called testing centers, scheduled an appointment with her pediatrician, and learned everything I could. Then came the tentative answer. Six little letters PDD-NOS. My child has Autism.

It's hard to describe the love/hate relationship I have with Autism. It's hard to deal with a diagnosis that doesn't have a cure - to know that this is something that she will deal with for the rest of her life. Things other parents take for granted, are our triumphs. Then I begin to wonder if I would want a cure. Autism is part of who she is, and she is extraordinary.

Do I cry myself to sleep some nights wondering if she will realize her dreams of getting married and "writing kid books?" Yes. Do I want to scream at parents that stare and whisper when she has a meltdown at the store because something wasn't stacked correctly in the cart? Yes. Do I want to smack kids that refuse to be her friend and laugh at her? Yes. Do I worry endlessly about my other daughter and the things she gives up for the word Autism? Yes. Is there anything I can do to change those six little letters? No. So we'll take it one day at a time and do it the best we can.

4 comments:

Haylee Munk Brown said...

I love this. It is very much how any parent would feel! Thanks for sharing Angel!!!

Unknown said...

This is beautiful, Angel. Your girls are lucky to have a mother like you!!!

Trish said...

She is going to do great things because she has great parents on her side!

Ruth said...

Yes, Kyrie is special, and we love her and Savvy with all our hearts. We love her just the way she is, because she teaches us so much. She truly is a blessing in our lives.