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  • Stacey C.

The Diagnosis

This post originally appeared in November 2013. It is crazy how life unexpectedly takes us on different paths... The Diagnosis led us down a path of learning and helping - not only our sweet Tornado, but also others who are touched by FASD. It is a path that has been led by our hearts. The love and passion of education and support for those touched by FASD has led us to the creation of Chart Hope.

There is a period of mourning when you realize that something is wrong with your child that she will never recover from. It is hard knowing she will not be "normal" like other children, knowing she may never be granted the independence that normal children have. It breaks my heart knowing that people may look at her and see "normal", but won't understand her and will make fun of her, judge her or call her a freak. It hurts, knowing about the struggles she will most certainly face. I mourned for my youngest daughter, Tiva almost a year ago when Lance and I attended a 3 day seminar presented by Diane Malbin about Fetal Alcohol and other Neurobehavioral Conditions. On the second day of the seminar, Diane was talking about symptoms and behaviors of fetal alcohol and she was describing Tiva as if she had personally known her. I was crushed and I literally couldn't stop sobbing. That heartbreak soon turned in to fear. How will I parent a child whose brain cannot function properly and doesn't respond to traditional parenting techniques? Lance's reaction was different from mine - he was determined...determined to learn a new way of parenting that Tiva could understand and relate to. He was determined to model calmness when Tiva's brain would "short-circuit" and she would go into a rage. We both were determined to be her biggest advocates and continually seek help to ensure her the best chance at a successful life. Fast forward a year to November 15th, 2013. Lance and I grasped hands as we left the crowded University of Washington Medical Center conference room filled with a dozen experts on fetal alcohol syndrome from pediatricians to speech therapists and psychologists to occupational therapists. We had just been given Tiva's diagnosis and as we walked down the hall with the psychologist, I glanced up at Lance. Tears were running down his cheeks. Before Tiva's appointment, Lance told me that he wouldn't cry when we were given a diagnosis. He said he felt he was prepared because they would probably just confirm what we had already suspected. Nothing really prepared us though for the way we would feel when the "official diagnosis" was given to us. Perhaps in a way, we hoped we were wrong about our suspicions. Unfortunately we were not, and it hurt a lot. I needed Lance to be strong, but he needed his chance to mourn too, so we held hands, allowing ourselves this time to be sad and cry for our daughter. We slowly made our way down the hall into a private room where the psychologist would share with us her plan for Tiva. Tiva's official diagnosis is "Static Encephalopathy, Sentinel Physical Findings, Alcohol Exposed". Static Encephalopathy literally means "permanent or unchanging brain damage". Sentinel is significant. Brain damage due to prenatal alcohol exposure can affect each person differently depending on when the fetus was exposed. Tiva was exposed during the first two trimesters of her mother's pregnancy. Alcohol kills a fetus' developing brain cells during pregnancy so they can't divide and multiply at a time when this is critical for growth. This is the reason Tiva is microcephalic, which means her head size is significantly below the normal range. Tiva struggles with attention and impulsivity and has extreme sensory issues. She is hyper sensitive to light, sound and touch. All of these things will make learning difficult and may explain why she has occasional outbursts. She was scored through a 4 digit complex diagnostic code and was rated significant, severe, definite and high-risk in all categories except facial characteristics. The way they explained it to Lance and I was that she has full fetal alcohol syndrome with mild facial features. Part of the psychologists plan was for us to form a support team. This specialized team is to consist of a pediatric neurologist and psychiatrist, our pediatrician, a support group consisting of members of the Fetal Alcohol community that are going through similar things as we are, and most importantly a person or people who we trust and who love and can handle Tiva in order to give Lance and I breaks together. This is crucial for Lance and I to remain strong in our relationship with each other and with Tiva. It is a lot to put together, but we can and will do it. Unfortunately it will mean more medical travel, as the closest pediatric neurologist is over an hour away. This also means more expense and time off work. It is very easy to become overwhelmed thinking of the enormity of it all, but God put this child in our lives for a reason and she deserves nothing less than the best we have to give her. We are still processing the impact this will have on the rest of our lives and it is difficult to think about. Even today at church, I looked over at Lance as he was watching Tiva and her inability to remain still or quiet. His eyes were wet with tears and I knew his thoughts because they are mine too. Sometimes it is hard to be strong - for both of us. At other times, all we can do is laugh at Tiva's antics - like during the sermon this morning when Tiva went in to "dog mode". Lance was tossing a stuffed animal for her to retrieve and then patting her on the head and scratching her behind her ear as she brought it back in her mouth, dropped it at his feet and panted happily. "Hey, she's being quiet!" He whispered with a smile. We are thankful to have been given some answers though, and a place to start. The team at the University of Washington FAS Diagnostic and Prevention Network were amazing! Lance and I were extremely impressed with their vast knowledge, professionalism, kindness and empathy. We are so thankful for their understanding and the love they showed us. We were humbled by the compliments we received from them on the things we are already doing "right". They complimented our older children and told us how impressed they were with their gentleness and patience with Tiva. They even said they expected to see a book written by us within the next 10 years. Hmmm...I'm not sure we are quite there yet, but I do have a feeling Lance and I will soon become experts on FAS. So we begin this journey, scared...yes, but now armed with some tools to help us along the way. It will be hard, but we will embrace it, her, each other and our faith and hopefully become stronger because of it.

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