Thursday, June 25, 2009

Somewhere Over the Rainbow - How Childhood Apraxia of Speech Affects the Life of My Child and Family

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.

13 comments:

  1. Thank you for this. I wanted to write an essay and jotted notes but never found the time to put it all together on paper before the due date. This is beautiful and hits on so many of the ways it feels to be a parent of an apraxic child.

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  2. A beatiful story. Thanks for sharing.

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  3. Elizabeth ZielinskiJune 25, 2009 at 10:08 AM

    Wow. This is a powerful and beautiful tribute to the love you feel for your family. Perhaps you don't realize, it's also a tribute to all of us parents who are walking similar paths by your side on behalf of our own wonderful children. I was moved and honored to read it, thank you for taking the time to write it. I look forward to meeting you at the conference and sharing our stories.

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  4. Lovely. Thank you for writing so much of what I also feel.

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  5. Christa,

    This is an incredibly eloquent, beautiful essay about your family. Tears continue to stream down my face. Your daughter is incredibly lucky to have such a strong, dedicated mother. Thank you for your inspiration.

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  6. Wow! That was a lovely way to express how it is to be a parent of a child with severe CAS. I was moved to tears and feel the way you put into words how you are feeling and dealing was so beautiful and honest. Thank you!

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  7. Beautifully written. No one understands like another parent of a child with CAS. Thank you.

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  8. Beautifully written. No one understands like another parent of a child with apraxia.

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  9. Georgina Slidell, La.June 25, 2009 at 1:08 PM

    Your story is amazing and describes the emotions of "living" with CAS perfectly. I have a son with CAS who was diagnosed in February. It has been a roller coaster of emotions, late nights researching, long days hoping that I am providing all that I can for him...You know all to well about these things. Elinor has been blessed with parents who seem to stop at nothing. You are a true inspiration. I was attracted to your story because of the title. I recently developed a website for my son and another little girl in my area with CAS and have been trying to figure out how to download "Somewhere Over the Rainbow" as the background music!!! It is just perfect because all of these children "dream to have a voice." God bless you and I look forward to hearing more of your story!

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  10. Never, never give up. Having a child with CAS is overwhelming. One day, however, you will stop and realize how far you've come on that yellow brick road. Thanks for sharing!

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  11. So well said, I can relate to it 100%.

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  12. Thank you for sharing what you wrote. My daughter was diagnosed in May with severe apraxia. We were blessed to be diagnosed when she did. She is starting to have speech and we caught her in that small window of understanding. She is three and is a normal little girl except for her lack of speech. So I understand what you are going through. I am nervous for her to start school, but thankfully she is beginning to have some speech. Never give up and just know that all of what you are doing is all worth it.

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  13. Your story is very touching, as mentioned in all the comments. Please just don't forget to leave one thing out...the joy, the happiness, and although no speech..I am certain there are humorous stories to share. As a parent of a non-verbal, severe apraxic child, I can relate...but we also must realize they are children. They need to play, and run and not be tied to therapies every single day. God hand picked us to be these very special childrens parents. Although the journey is hard, bumps in the road, many...many tears shed, the one thing we have is laughter and love. Our kids seem to have the most plesant dispositions, and go get em attitudes. I am not knocking your story(it's beautifully written)...but just reminding you to share the funnies(believe me, you have more than you think), the blessings, the wondereous adventures your child has taken you and your family on. We also spend quite a bit of time in numerous different therapies; however, I will not think back to my childs childhood and only have memories of the therapy classes we attended. I want memories of ball playing, butterfly chasing, digging in the sand, getting dirty, climbing trees...ect. Therefore, we do not allow his therapies to consume his life or consume the life of our other children. Keep your chin up!

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