Can You Hear Me Now?

This morning brought with it the task of taking Lily for her hearing screening. After carefully reviewing mounds of literature on autism and realizing how significantly our child fit the descriptions of the red flags for the social/communication aspects of this disorder, we felt the hearing test was just a "step" in our journey to an autism diagnosis. We knew it was a necessary one as it was important to rule out a hearing loss, but we felt our child was hearing. She responded to sounds in her environment, she had language and used words such as "cat - meow, elephant, zebra and cow-moo". We felt assured that we would go, they would rule out a hearing problem and we would continue on down the road to our final diagnosis of autism. Maybe I felt this way because I have dealt with autism in the past, because I have seen the adult signs of it and because I knew my child perfectly fit the "social/ communication" profile of autism.

What we found out shocked us.

We arrived with Lily for our 9:30 appointment. She enjoyed pushing a little chair around the waiting room and sometimes looked up to watch "Dragon Tales" on the little tv in the office. The audiologist arrived and brought us back to a room full of testing equipment. Little buds attached to wires were put in her ears and she squirmed and kicked as they tried to get the necessary readings.

Then, Lily and I were put in a sound proof room where different frequencies of sound were played on either side of us. As she sat in my lap and I heard things like ocean waves, a woman talking etc, I saw that she never ONCE turned her head even slightly in the direction of a sound.

Upon leaving the audiologist told us that she felt strongly that Lily had some degree of hearing loss and that she may only be able to hear some high frequency sounds and no low frequency ones.

A scary, cautious sense of hope began to fill me. Could it simply be that my child has a hearing loss? Does this mean that with services and hearing aids my child could lead a complete "normal" life. It is frightening to find comfort in this hope as we don't want to set ourselves up for another crash of emotions like we just experienced. She has been referred for further evaluation by someone who can measure her brainwaves to see what sounds are registering in her brain.

So as hope remains alive, so does the sense of reality that this could be something more. And now the "bargaining" begins. Oh God, please let this just be a hearing loss, please give us hope that our baby will be okay.

A long, hard, beautiful road...

The reality of it all has set in and of course, completely overwhelmed us. While we spend our days searching for information, calling our friends, telling people of our news and networking with others to try to get the best possible care, our spirits are kept strong by just one thing. Lily. She has never changed, she has remained the same beautiful, cheerful, giggly girl that we have always loved so much. It is hard to be sad when you see her smiling face coloring at the table or throwing a ball in the hall and saying "cat" to let the cat know she wants her to play with it. She still loves when I sing to her, she still loves bathtime more than anything in the world, she still wants Mommy to read her her books before going to bed.

I feel blessed that she still wants Mommy to pick her up, that she still allows me to comfort her and I still feel hope that some day I may hear the words "I love you Mommy".

My first post, a realization

My daughter Lily is 16 months. 5 days ago, I was watching the news and saw a clip on a website about autism called www.autismspeaks.org . Intrigued, and because I always had this strange suspicion that my daughter might be effected by this disorder, I decided to check it out. The first video I watched was of a little boy, 12 months who was "typical". This little boy answered to his name, he looked at his Mom when she spoke, he showed her things and pointed to things she was talking about in books. My heart sank. I immediately emailed my husband (who was underway with the Navy). All through my daughter's bedtime routine, and 2 hours of work following that, I had a horrible sinking feeling inside of me. Something was not right.

As can be expected, at first my husband disagreed. He said, "No way does our daughter have that, she is just a baby, Sarah. She is just in her own little world" Those words stabbed me like a knife, as I knew that is the exact description I have used to describe autism to others in the past.

I emailed my mother, I searched the internet, I read as much as I could over the next 24 hours. The more I read, the more I knew. The more I knew, the more I realized. My beautiful, perfect daughter has autism.

It hurts, it hurts so deep inside and then it makes me feel guilty for hurting.

But she is still my Lily, she has never changed. She is the same girl she has always been. The same beautiful, innocent, giggly, happy, smart girl that I love.