Katie Shaw was like any other child—the light of her parents eyes. She had friends, was adjusting to high school, and was close with her family.
While in 10th grade, Katie had an experience of a lifetime when she journeyed to Costa Rica for a few weeks in the summer. However, once back from this adventure, her parents, Michelle and Keith, noticed something was wrong. Katie would tap her leg frequently or move her arm around a lot. Her parents would tell her to stop, and Katie seemed to ignore their repeated requests.
After these movements persisted, Katie’s family sought the help of a doctor, wondering if perhaps these body jerks were not voluntary after all. Michelle Shaw says, “Looking back on it all now, we realize we missed some of these early signs, and as a parent, you can’t help but feel guilty for not having taken steps earlier.”
After a few visits with Katie’s doctor, the Shaw family learned that she had Tourette’s Syndrome, a disorder of the neuromuscular system. After first being hopeful that Katie would grow out of her tics, the Shaws were now faced with challenge after challenge as the tics became more severe and life got harder for the entire family.
There is nothing worse than seeing your own flesh and blood in pain and not being able to do anything to stop the pain. This is only magnified by the stares and blame others would palce on Katie and her family when in public. Michelle shares, “No parent wants to believe their child is disabled, and it is a hard thing to come to terms with. To see her hurting and suffering in her daily life is extremely heart wrenching. We have been trying to help her manage her disability in many ways, but nothing has taken away her pain.”
Michelle and Keith have also come to learn how well their daughter, Katie, masks her tics throughout the day just to be like everyone else. This is so tiring for Katie’s body and requires the utmost concentration just to try to control tics that Katie has no control over. However, this is necessary for Katie to feel like she can “fit in” in social settings.
Katie is now in college and away from home. Simple things we take for granted, like the ability to live in a dorm with other students, are a challenge for her because Tourette’s Syndrome. The noise level in the dorm greatly affected Katie, so the Shaws moved Katie into her own apartment so she could focus on her studies and have the quiet of her own space. The Shaws make frequent visits to Seattle, where Katie is in school, to help her manage her illness, visit doctors and offer Katie the support she needs.
Tourette’s causes Katie so much anxiety in social situations. She has no control of her body or what she might say, and this can be quite embarrassing to people who don’t know she has this disorder or choose to blame Katie for tics she cannot control. People stare and don’t understand that Katie’s actions cannot be controlled.
Life for the Shaws is not easy. Watching your child go through daily life being stared at and judged is unimaginable to most of us. However, there is a light at the end of this tunnel for the Shaws—and you can help. Next week, read more about Katie, in some of her own words, and learn about her new mission. Her own family has raised two service dogs for Canine Companions, and now Katie is seeking her own service dog to help her navigate daily life.