Sierra Joy. Our Precious Face of Apraxia
Sierra is an energetic and brave child; unafraid to talk to strangers, teachers and peers even though she knows she’s not understood. She begins the conversation and people look at me as if they want me to translate. I just shrug and smile. She tells them everything that is in her heart and mind and then says clearly, “Bye,” and she walks away. The people she leaves behind smile to themselves; not because they understood her, but because she is a conqueror that is filled with contagious joy.
Her chats with others are filled with laughter, hand motions, and sass. After two years of therapy, about 10-15% of her words are understood. Those words give me a hint of what she’s speaking about. I help guide her conversations by asking her questions. She elaborates and sometimes on a lucky day, we understand one another fully. When this happens, her eyes light up and she throws her arms around me as a reward for the hard work of communication. Sometimes our talks don’t end this way and I have to tell her I can’t understand. She is disappointed sometimes she even yells, but in the end handles it with grace.
This is her story and my experience through the stages of grief that accompanied it:
When she was a year old, I wondered why she was so quiet. There was a lot of screeching, but no phonic sounds. Our family lived and worked overseas, so I reasoned since she was hearing two languages that she would be a late talker. But I didn’t worry. This was the beginning of my grieving process, denial. When she was 20 month old the doctor said not to worry. I worried anyway. We worked daily on speech. She always wanted to be held and we worked for months teaching her the word “up.” We modeled, bent down to her height and slowed our speech, and still her chubby hands reached up; her eyes pled, but she was quiet. The difficulty learning this word made us understand the depth of her speech delay.
It was time to act, something had to be done. I knew there was something wrong. We returned to America and had her assessed and began speech therapy right away. However, I was still denying there was a real problem. I thought, “Surely, therapy would cause a quick change. These are the best therapists and certainly within the year, she’ll be age appropriate.” Since we were relocating back to America, we were willing to move anywhere for the best treatment. Thankfully we found a clinic that specialized in CAS near our family. Our lives changed. Our lives were spent in the car driving back and forth to therapy. During the long rides Sierra demanded to talk to me. However, when I can’t see her expressions, I cannot understand Sierra at all. I couldn’t look at her in the backseat because I was on a fast moving freeway. She would scream at me when I didn’t understand and cry for most of the commute. Once we arrived she would refuse to get out of the car. Speech was hard work and she had no desire to go inside! Denial had passed and pain and guilt filled its place.
My mind was filled with thoughts, “What if I caused this? Maybe I hadn’t eaten the right food during my pregnancy. When she had pneumonia as a baby, could I have taken her to the doctor more quickly? Maybe she hadn’t moved enough in infancy to form motor pathways. Maybe if I practiced and read with her more, she would be better.” Every study I read caused me to doubt and torture myself and be filled with pain, pain for her. I shed tears for her childhood friendships that would be missed or minimized because of her communication skill. I grieved for the conversations she would never be able to have. The precious chatter of my three and then four year old was lost forever. Only spoken to herself, isolated. This is when I began the next stage of grief, anger.
My husband is a saint because he took the full brunt of my anger, screaming, and pain. There was no one else to direct it towards. At therapy, I was the concerned and involved parent. I would hold it together while I watched graduate students puzzle over her speech at the college clinic. I would watch through the window as they reduced my precious baby to a flat unfeeling notebook page. All the while, they commented to each other that they didn’t know how to write down her answers because her speech was so strange. I cried silently on the other side of the glass then stuffed it all down and thanked them for their time at the end of the session. With others, I was quietly grieving, unable to vocalize my emotions. I was open about her diagnosis and therapy, but was incapable to voice my feeling about it. I just kept it inside and put a smile on my face. My husband was not lucky enough for that fate. My anger was so fierce because there was nothing to direct it towards: no one to blame and nothing to do. There was no way to make apraxia disappear, no guaranteed cure or magic therapy. Finally, the anger worked its way through me. My husband and I came through the fire as advocates. A role I never considered or would have chosen. I accepted it, the final phase of grief.
We would be her voice. We are responsible for her like no one else. I needed to be willing to read discouraging studies and apply the helpful parts to Sierra’s care. We changed her diet, tried everything that may help: multiple speech therapy sessions, chiropractors, gluten free diets, probiotics, fish oil, and allergy treatments to help her digestion and hopefully help her brain receive the nutrients it needed. I try to understand each process as it comes, prepping for IEP meetings and considering her class placement with counsel and care. Researching assistive technology to understand what devices can help her be more successful as she enters elementary school. Searching for the best care for her has been tiring, but I always just think of her grown and talking and then it’s easier to continue battling.
While her future is still unclear, each small growth encourages us to keep moving forward in hope. Our little warrior will keep fighting. Her newest accomplishment is the “k” sound. She likes to walk around the house saying, “cu, coo, cu, coo!” She smiles and wants praise and I shower her with compliments and kisses for her hard work. Then she walks down the hall making songs with her own lyrics and melodies. She always sings about her favorite people, “Nana, Abby, Naaaanaaa, Abbyyy, Naaannnaaa,” while she holds a microphone and throws up her hands with dramatic flair. We smile at our tenacious ray of sunshine.
