By Christa Stevens
[An essay in support of the scholarship application for CASANA’s 2009 National Conference on Childhood Apraxia of Speech]
One of the most memorable scenes from the classic film The Wizard of Oz is definitely the magnificence of the Emerald City. Remember how the Wizard requires all inhabitants and visitors to wear green-tinted spectacles? The view that these glasses offered made the Emerald City magical to Dorothy and her traveling companions, but it also distorted their vision and intensified the power of the Wizard over their lives.
Just like those green-tinted spectacles, my family’s vision has been totally jaded by our Elinor’s diagnosis of severe childhood apraxia of speech. The diagnosis has colored every aspect of our lives. To have a child who is entirely nonverbal has fundamentally changed how our family functions and experiences the world. To have a child who is nonverbal – but maybe isn’t doomed to be – if the “right” treatment decisions are made and implemented – is both overwhelming and debilitating.
To help conquer the powerful force of CAS my husband and I have changed our professional paths. He left behind a job he enjoyed and found fulfilling and aggressively sought out a new but extremely challenging professional opportunity to provide additional financial resources for our daughter’s therapies. I quit working full-time so that I can be my daughter’s full-time advocate. Elinor is extremely vulnerable because she cannot communicate that she is hurting, scared, or worried. She cannot tell me how the people that she is in contact with at school, for instance, treat her or make her feel. I have had to become an expert in reading her body language and monitoring her habits and behaviors. Her teachers, therapists, even her school bus driver, know that I am going to ask a lot of questions about her time with them. These actions have required my husband and me to be very assertive and step way outside our comfort zone. Often we could easily identify with the Cowardly Lion in the Wizard of Oz and feel desperately in need of the courage it takes to provide for Elinor’s special needs.
And just like the Scarecrow in the Wizard of Oz, I have had to put in a request for some additional brain power so that I can wade through the research and technical materials that help me understand my daughter’s diagnosis. The treatment options are vast and complex and I have spent countless hours researching the effectiveness of a variety of interventions such as hippotherapy, music therapy, nutritional support, ASL, AAC devices, and speech therapy methods. Furthermore, although I have no formal training in speech therapy, when one considers all the hours I am spending with speech therapists as they treat my daughter and the time I spend at home working with her individually, I may just end up being able to pass the state SLT licensing exam.
Sadly, the time that must be spent on Elinor’s special needs limits the time that is available for other activities. For example, I don’t cook for my family the way I would like and our house is often a mess. Elinor’s younger sister spends longer days at preschool than we would like but we feel it’s better that she be at school than sitting in the waiting room at therapy offices while Elinor gets treatments. I hear other women talk about scheduling “date nights” with their spouses and I remember the last set of “date nights” my husband and I had: six-weeks of evening ASL classes so that we could help build Elinor’s signing vocabulary. Right now we are considering taking our girls on their first family vacation but we don’t know if it would be wise to use the financial resources that way or disrupt Elinor’s therapy schedule.
Without a heart, the Tin Man in the Wizard of Oz was spared the persistent and unrelenting heartache that my husband and I feel as we deal with the severity of Elinor’s condition. We watch – and try to figure out our role – as other children come up to her and try to engage her in conversation and often end up walking away when Elinor is nonresponsive. We listen to other parents relate humorous stories about their child’s verbal precociousness: silly questions, grand storytelling, and energetic dialogue. Elinor’s little sister’s speech is developing normally and even this has been a bittersweet experience as we see how easily she produces sounds and can’t help compare her fluency with Elinor’s unrelenting struggle to produce verbal speech. And we feel desolation as we think that both sisters are missing out on developing the complex and intimate sibling relationship that is supported by spoken language. Our hearts beat fast as we rush Elinor through a hectic schedule to get her access to the educational and therapeutic experiences that she needs. And guilt weighs heavy on our hearts as we look back over the day and think of all the missed opportunities where we failed to integrate various therapeutic techniques into the daily tasks of family life. Our hearts are heavy and tired and have broken time and time again because of Elinor’s condition. But we just keep mending them and trying to find a safe place and way to grieve and then rejuvenate ourselves for the work that still needs to be done.
With childhood apraxia of speech, there is no magic answer – no set of ruby slippers – that is going to instantly cure our daughter of her severe language disorder. Our family is facing years and years of therapeutic interventions, an increasingly heavy financial burden, mind-numbing research, agonized decision-making of choosing among treatments, and long tedious work of implementing treatment plans. Even though we regard the world through the tinted spectacles of CAS, we are trying not to be permanently distorted by the view. We try to be honest and realistic about the journey that lies ahead for our family while still appreciating the marvel and magnificence of parenting our amazing and delightful daughters. We know the yellow brick road of parenting a child with CAS has taken us – and will continue to take us – down some difficult and troublesome paths. Although we cannot see what lies ahead or how long our journey will take us, we can clearly imagine our beautiful and enchanting Elinor impersonating Judy Garland as she sings:
Somewhere over the rainbow
Skies are blue,
And the dreams that you dare to dream
Really do come true.