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RAISING

ALISON I

t was almost an “ahha” moment. A soft afternoon glow broke through the glass windows shaping the doctor’s waiting room. Susie Werner was sitting in her chair, her hands fixed in discomfort. A crowded waiting room, filled with indistinct tension, disturbed Susie’s thought. She was all alone, eyeing everyone with aversion.

BY ADAM POLTORAK

Susie, at this very moment– even though nothing had happened–felt a ubiquitous weight pull her down. She is confined by emotion, struck by fear and piercing realization. Then the taps of waiting-room patients–that is, in Susie’s ears–pounded violently with the irregular beat of her heart that, just a moment ago, was calm. The entire framework

of Susie’s life morphed into an unfamiliar configuration while she sat at Lucile Packard Children’s Hospital. Although she was still waiting for the doctor’s visit, Susie knew subconsciously what happened to her daughter. The knowledge was potent; it was growing stealthily in her mind. While Susie’s daughter, Alison, laid quietly on her

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lap, she already knew the outcome: Alison had autism. Emotions poured out of her: anger, pain and sadness. Her husband, Gunter, walked into the waiting room and saw the torn expression on Susie’s face. “Susie! What happened? Did someone die?” Gunter said, in dismay. The room grew silent. Susie’s emotions drained from her face. She stood up with strength and said, “Nothing happened, Gunter. Our appointment is in an hour.” Take away Susie’s two beautiful children, and what’s left is her powerful charisma and dedication. Susie represents the ideal role model for mothers struggling to raise a child without special needs. Currently, 1 in 88 children are diagnosed with Autism. With Autism Spectrum Disorder being a pronounced issue, Susie carries the key to coping with children on the spectrum. Susie connects with her five-year old son, Derek, and her seven-year old daughter, Alison, with enormous amounts of love, compassion and care. The main challenge with Susie is raising Alison because she is more demanding in needs, support and attention. Susie’s perseverance and coping

with her situation is remarkable. During her life-transforming experience in the waiting room, she grasped the situation that had confronted her and turned her life around; her perspective is no longer the same. I began to understand Susie’s trauma with Alison as we sat across each other, conversing in her small office room. A silky, orange hammock bridged on a ceiling beam behind her startled me. I asked her about

its odd location. Susie mentioned that her office is the quietest place she can be with her daughter. Susie then said, insightfully, “One thing I love about her in general is that she loves to be snuggled and

held.” As she talked, I imagined the weightless quality of the hammock when Susie would sit with Alison; their content emotions suspended together. The hammock is like the bond holding the two together. They share laughter and smiles on the hammock; an inseparable connection is always made. Even though the situation was so emotionally devouring, Susie discarded her thoughts and told herself, “I am going to talk to the doctor and figure out what we need to next.” From that night, Susie has fought and stood up for Alison and does everything she can to keep her strong. Day-to-day life for Susie is a challenging obstacle for her. Susie is a project manager

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engineer at HP while participating in volunteer jobs. Once a month, she participates in mother groups in which she shares her stories and experiences. Susie keeps her children busy each day with sports such as swimming, soccer and baseball. In 2010, Susie participated in an “Autism Walks” Event and raised 10,000 dollars, with the support of family and friends, to help advance the current research on Autism. Susie’s daughter was born in 2004 and was diagnosed with Autism Spectrum Disorder in 2007. Susie had explained to me when I asked where her daughter fell on the spectrum, “Kids on the spectrum are at all different types of levels and my daughter is functioning at a few months

old when expressing herself .” After the diagnosis, Susie began speech therapy, behavioral therapy and Occupational Therapy (OT) for Alison. Not only does her

Institute dedicates itself to understanding disorders and developing solutions. Susie contributes to the research by allowing her daughter to be part of the program. “I cannot say I don’t go through a roller coaster of emotions,” Susie had revealed to me. Susie rode the roller coaster of emotions on a startling morning four years ago. This is a typical day for the Werner family: the kids wake up for school while Susie and her husband work together to assist them with getting ready and preparing meals. Susie added, “If I am lucky my son will be happy that day and get himself ready and come out and say, “Look mom! I am

I cannot say I don’t go through a roller coaster of emotions” –SUSIE WERNER daughter have the best available opportunities, Susie has reached out to all medical resources in her community. The UC Davis MINDS Institute is Susie’s most trusted source. The MINDS

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all dressed!” Alison was not dressed. Susie and her husband walked over to Alison’s room to find themselves–to lose themselves– when the sight of incomprehensible pain flooded their vision. Alison was experiencing her first seizure. Arriving almost instantly, paramedics immediately treated Alison with medications and common procedure. “When I saw my child laying there and she almost looked like she was dead, turning all blue, I asked myself, is this it? Is she going to die?” Similar to the time she realized Alison’s condition, Susie didn’t let Alison’s first seizure absorb her. Susie said, “This is not the end and I told her as she was just laying there, Alison, you are not going anywhere, you will be just fine. Her eyes

ideal reaction? Susie lives by the motto: “You can sit there and feel sad for it or you could fight for it.” She hinted that she wants give her daughter a voice in local communities.

You can sit there and feel sad for it or you could fight for it.” –SUSIE WERNER opened up and I kept telling her she would be fine.” Because Susie’s strength is built upon layers of compassion, she was able to endure the tragic occurrence. During the seizure, Susie had told Alison as she laid on the ground, “You are not going to go anywhere because you still owe me a “Mommy, I love you.” When a moment so appalling occurs, what is the

She believes, “The difference between a parent with a special needs child and one without is that you don’t want to see your child struggle with basic daily living, and that is the hardest part.” I noticed the tone of distress in Susie’s voice–not the distress of having to assist Alison, but the agony when Susie watches her own child endure the struggle of simple everyday tasks. Still, in spite of all her challenges and hardships, Susie perseveres. There is loud

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screaming and banging. What is Alison trying to tell her mother? The air is tense in Alison’s bedroom. Off to the side, Derek is trying to show Susie the Lego construction he built. Alison’s gestures are giving Susie a mixed signal. As if the room became a narrow tunnel, Alison’s screams begin to slam harder against the walls in a violent echo. Susie’s thoughts are scattered on a subliminal level; she can’t seem to recognize Alison’s gestures. Derek, descending into to the eerie, unsettled sounds, shatters his Lego masterpiece between his two hands and hurries out of the room. Then, Susie sculpts a thought that pierces through the noise. She notices the way her hands are shaped to indicate hunger. Susie immediately brought her some snacks. Alison’s speech therapist, Alma, works closely with Susie to help her raise Alison in the best way possible. Alison “has

challenging behaviors in a way that she has maladapted forms of communication. Pulling, screaming, kicking and pinching are some of her ways of communicating.” Because Alison cannot vocally communicate her needs and wants, Susie has to understand her daughter with gestures and certain cues. Even with the setback in communication, Susie is able to understand Alison incredibly well. Susie has a variety of coping strategies for raising Alison and she hopes to influence other mothers. “Susie is considered a role model in the community,” Alma had said, generously. Alma refers to communities like “Autism Speaks” and “Autism Now.” With determination, Susie has achieved a purpose. Susie has built a hammock so strong, that she can carry all of the

special needs communities with her traumatic experiences and powerful motivation; she can start a movement to ensure that every special needs child receives the loving and caring support that Susie provides her children. Susie has traveled on a long path of incomprehensible determination to fight through the trauma and move forward for her daughter’s future. During an interview with Susie’s husband, Gunter had said, “She is the glue that holds this family together.” I walked over to the hammock and sat quietly in contemplation. Susie came over with Alison in her hands and placed her in my lap. Susie said intently, “Deep down, I don’t know what happened to my daughter, but I do know that she changed my life and I wouldn’t want anything to be different than it is today.”

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