Miss Independent

Ahhh, today was the big evaluation day. Our forms were filled out, our outfits chosen and the address to the center carefully typed into the GPS. As we drove to the appointment, I was filled with both hope and fear.

Lily was overjoyed as we arrived at the center. The waiting room was filled with lots of cool toys and Lily was crawling through tunnels and throwing balls as we waited. The caseworker soon came to get us and brought us back to another room with toys. Then the "cooking" began. Lily stirred the pots and moved them around the burners on the pretend kitchen as the adults talked. She said over and over something that sounded like "Cooking, What's that cooking?".

I had pre-filled out a questionnare and when the evaluators came in, they engaged Lily in activities like coloring and putting a very small sprinkle into a little container. They demonstrated feeding a babydoll and to my surprise Lily also took the spoon and "fed the baby". She even wiped her face (and when I told her "good job" she came and wiped mine too).

They asked me lots of questions about things Lily could do physically, about what words she was using, about dressing herself and about following directions.

At the end I was given her scores. The "norm" was said to be in the 100 range. Lily fell into or above that norm in every category but one. A score below 78 in any category qualified her for services. In the area of "receptive language" Lily scored a 76. This means she is not just below average, but below the norm for being able to follow direction and demonstrating that she knows what you are saying to her. She qualifies for services because of this.

Unfortunately, it took us so long to get and appointment that by the time we move in February Lily would just be STARTING with services. The dr. told us that she would have made the recommendation for a re-evaluation in 3 months anyways.

In the meantime, we have lots of things we can work on at home. We can demonstrate following instructions, we can challenge Lily to follow what we say instead of just doing things for her (like "give me the bowl" or "throw that away".)

There are 2 possible reasons for this, either 1) Lily is having problems processing the things we are saying to her or 2) She knows what we are saying and is just too independent to want to do them. I think it may be a combination of the 2. Lily demonstrated the 2nd reason very well though as we were leaving. The dr. asked her for the spoon she was holding and Lily looked at her and grunted and hid the spoon behind her back as if to say "no way! this is mine!". haha.

Hear Ye, Hear Ye!

It has been a confusing few weeks for us as we have tried to determine for ourselves what we felt was truly going on with Lily. Jon was gone for all but a few days in October and November. We were lucky enough to have him come back last week for the LAST TIME. He is now with us for the long haul and Lily and I couldn't be happier. Lily seems to be "coming out of her shell" a bit more, or maybe we are just hoping that is the case. She does seem to be interacting more with us and has even added new words to her vocabulary like "clock", "bubble" and "ball". She has also learned to blow kisses. She seems to be responding to us when we talk to her a little more than she had been. We continue to remain hopeful that this may just be a "bump in the road".

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Today Lily had an appointment with an ENT where they performed another audiogram (observational hearing test where sounds are played in a booth and the tester observes if the patient is responding to the sound). Lily failed this same test last time she took it. Since then both Jon and I have really been trying to determine if we felt she had a hearing loss and we both came to the same conclusion, "not a chance".

Today's test was slightly different. First, a LOT more sounds were played, a LOT more. With the first test, the tester played very few sounds but this time we got a good variety and a lot of repetition. Additionally, for this test Lily got a little "reward" if she looked in the direction of the sound. After she would look, a little box would light up with a little animal inside. This kept Lily very interested. She passed with flying colors. I defininetely felt a lot better about the validity of this test as opposed to the first one. This time if Lily seemed interested in something on the left, the tester would play a sound on the right. It was obvious that Lily could hear the sound because she would turn her head away from the thing she was interested in.

After the audiogram she was seen by an ENT specialist who examed her ears and found no problems what-so-ever. (He even let us know that the ear infection she had last week was cleared up).

So where does this leave us? We just don't know. Lily has another hearing test where her brainstem's response to sound will be measured through an EEG in 2 days. For this test she is not allowed to sleep the night before (fun, fun). At this point, I truly feel this test is unnecessary but I guess we still have to do it.

She also has another appointment to have her development evaluated on December 5. After this evaluation, it will be determined if she is eligible for intervention services (which we hope she will be).

We do see progress in her and we hope that we will get through this and with the right intervention that Lily will have the chance at a "normal" life.

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.