Sunday, April 6, 2014

Julianna, Part 1: The "Fear" Phase

When I think about what I have been through in Julianna's 10 years of life so far, there are definitely stages that I can identify. If I were to sum up the first stage, or first couple of years of her life, I would call it "The Fear Phase." I was filled with so much fear during that time...fear about why she had these little behaviors, fear about why she wasn't progressing like she should, fear of what all her symptoms could mean.

I knew that her arm flapping, head shaking, and her little way of wiggling her arms and feet and clenching her jaw weren't normal, but I wanted to pretend they were. I wanted to keep waiting, just a little longer, because I kept trusting that she would grow out of these behaviors, and to keep those little feelings I had in the back of my mind, for as long as I could. The truth is, I didn't want to face it. I didn't even want to consider the possibility of something being wrong, because I was afraid. Afraid to know what it might be. Afraid of what it might mean for her future. Afraid that it she might have some serious condition that couldn't be fixed. Fear clouded my desire to seek out answers.

For my very first post, I have decided to share something I wrote in my journal way back on May 15, 2005. Julianna was only 17 months old; I was 23. I think it speaks volumes about how my journey began. (And please keep in mind, this is how I felt at that age. My views have certainly changed since then. But when it's all new, this is how it feels, at least how it did to me.)

"On Friday, my neighbor below knocked on my door and said she needed to talk to me. She said that Julianna has some autistic tendencies--flapping her arms, shaking her head, and repetitive mouth sounds. I was shocked, to say the least. I told her that Julianna is very social, can say at least 6 words, is very loving, and that I would never have suspected autism. She works with 3-year-old autistic children so she is familiar with their behaviors. Before she left, I couldn't hold back the tears, and she just hugged me and said, I don't know for sure, it's still very early to tell. I told her I'm glad she told me anyway.

After she left, the tears kept coming, and I held Julianna. I couldn't contact Joel at all that day because he was at Lagoon, so I called my mom. She said that just a few days ago, she was researching autism because she also suspected it. I couldn't believe it! She found this test called CHAT that they give to 18-month-olds. So she asked me the questions, and Julianna passed them all, except for one, but that doesn't even qualify her to be at risk. This was very reassuring, but I knew the only way I could truly be comforted was to pray. So after I put Julianna down, I prayed, earnestly, for comfort. And it worked! I wanted comfort because there's no way I can know for sure if she's autistic--she's too young. So, instead of driving myself crazy for 6 months, I needed to take this worry from my mind. And through prayer and the Holy Ghost, this was possible. I am so grateful for that.

I then researched autism online, and the more I read, the more comfort I received. Sure, she flaps her arm and shakes her head, but she's very smart. At this point, I really think she is just fine, and will grow out of these behaviors. But I will also keep a close eye on her and do things to keep her engaged and learning.

The Holy Spirit reaffirms to me, again and again, that she's fine. Even when I get a thought that maybe she could have autism, the spirit comforts me. I am now very educated about autism--which is good because if Julianna stops talking or just regresses, I know something might be wrong. I am also having her doctor observe her just to be sure. The spirit is wonderful, but I need all the assurance I can get right now."

This moment in my life is seared into my memory. I remember opening the door to my neighbor, inviting her in, and sitting on that couch, crying, as she tried to console me. I can only imagine how difficult it must have been for my neighbor to tell me what she thought. Without her courage and boldness, and specific educational knowledge, I am certain that I would have waited much longer to look into anything. This mother used her intuition to open my eyes, to start to face my fears, and I will forever be grateful for that.

She soon began physical therapy after this, because she wasn't walking at this age. I wasn't afraid of physical therapy--I knew she needed it, and her doctors insisted on it, so this was the first step I took on her journey, the first fear I would face. She began crawling around 12 months, sitting up at 9 months, both at the very end of the curve for development, but it was almost like she was scared to walk. I can vividly remember "tricking" her into taking steps. I would hold both her hands, then place a toy in one of her hands, then the other, and she'd be left standing there, holding both toys. I then would back up and beckon her to me, and instead of trying, it was like she was frozen in fear, and she would cry out for help. It was so puzzling. Here's what I wrote about my first visit with the PT:

"She determined that Julianna has low muscle tone in her thighs, which might keep her from walking. So she showed us some leg exercises we can do to strengthen her muscles. I also asked about autism, and she said she's worked with many autistic babies, and that Julianna does not have it! She said the arm flapping might just be a sensory thing that she'll grow out of. It was so nice to hear her say that! Now I hardly worry about it."

This first visit with the PT definitely calmed my fears a little bit, hearing a professional say she did not think Julianna had autism, so I tried hard to believe that she just needed help walking. After a few months of physical therapy, Julianna finally began to walk at 20 months. This therapy was provided by our local regional center, and they also sent a "teacher" to work on other areas of development with her. Before I knew it I had two people coming to my apartment, working with her. I suddenly began to feel like my daughter was needing too much help. I didn't want her to need so much help. I knew that something wasn't quite right, that I didn't have all the pieces to solve the puzzle yet, but all the specialists coming over made me feel like my daughter wasn't going to be okay. And I really felt like she would, I wanted so much for her to be fine. I wasn't ready to face the fears and the questions yet. So before she turned two I made one of the biggest mistakes I've ever made as a parent and regretted it for years to come......

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