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Stacey’s One Little Word for 2014

Created with Katie Pertiet's Botanist Notebook No. 14 Kit (Designer Digitals) and Maiden Orange font (Font Squirrel).

Not so long ago there was a 12 month-old girl who said just two words, “hi” and “bye.”  Without warning, those two words disappeared and she said no words at all.  Her parents worried she might have hearing loss so they took her to an audiologist.  The hearing tests revealed chronic fluid in her ears. Her parents scheduled ear tube surgery. A month passed and the little girl’s vocabulary did not improve. The little girl’s speech therapist had a candid conversation with the child’s parents.  She suggested they see a speech-language pathologist who specialized in Childhood Apraxia of Speech, or CAS.  The parents made an appointment and tried to remain hopeful while they waited.

Time passed and the little girl was diagnosed with CAS.  While it wasn’t a diagnosis the parents hoped for, they felt a strange sense of relief once there was a name for what their daughter had.

In the months that followed, a team of therapists worked together to put a plan in place to help the little girl communicate.  The little girl did speech therapy three times a week and occupational and music therapies once a week. Initially progress was slow, but the little girl began to say words. Her parents used sign language to help her sequence words so she could build simple phrases and short sentences.  Over time, the little girl’s parents began to decode more of her language, which helped her to be understood at home.

* * * * *

As much as I’d like to say the above story is about someone else’s life, it’s not. Research CAS and you’ll learn it’s a motor speech disorder, not a life-threatening disease. I am thankful my daughter is otherwise healthy. However, speech therapy sessions can be grueling. It’s difficult to go from mommy to speech therapist and back to mommy again multiple times a day.  But, this is life as I know it right now, and that is okay because my daughter is responding to therapy and is making progress.

Both images in this post were created with Katie Pertiet's Botanist Notebook No. 14 Kit (Designer Digitals) and Maiden Orange font (Font Squirrel).
Both images in this post were created with Katie Pertiet’s Botanist Notebook No. 14 Kit (Designer Digitals) and Maiden Orange font (Font Squirrel).

This-coming year, the One Little Word that will guide me is PROMISE. Here’s why:

I promise to persist. There are no “days off” when a child has CAS.

I promise to make home-practice as play-based as possible.

I promise to remember I’m not just a mommy, but a wife, daughter, and friend.  Therefore, I will nurture those relationships as well.

I promise to have fun even when the to-do list is long.

I promise to be optimistic if there are setbacks.

I promise to take care of my own needs. If I don’t take care of myself, then I cannot take care of my daughter.

I promise to make time for other endeavors. I will continue to write and consult. I will try to do something artistic since it’s been too long since I’ve done something creative.

I’ve written about speech-related issues with my daughter on my personal blog, Raising a Literate Human, but I’ve never written about the CAS diagnosis until now. I haven’t been sure I wanted to share something so personal in a public forum. However, in the past year, I’ve learned several important things that are helping me become a better parent, educator, and person. I’ve begun developing what I have learned into a set of maxims I felt belonged out in the world.

  • Love children for who they are: One of the parents from my daughter’s class shared some advice with me right after the CAS diagnosis.  She said, “You must love your child for who she is, not in spite of what she has.” At the time, I didn’t know how I’d ever get to that place. However, I have come to accept my daughter’s diagnosis as a part of her. I love her for it since she’s teaching me so many things. For example, I’ve learned about receptive and expressive language. She’s also taught me to be more patient and empathic.
  • Don’t let a diagnosis define: My daughter has CAS, but that doesn’t explain who she is.  She is a daring, humorous, loving, caring, driven little girl. Adjectives define my daughter, a diagnosis does not.
  • Don’t take everything others say to heart: I’ve heard everything from “She’s just a late talker” to “She’ll talk when she’s ready” to “Einstein didn’t talk ’til he was three.” Ask any parent whose child has CAS and they’ll tell you these things feel like an arrow shooting you in the chest. I’ve come to realize people don’t mean to be hurtful, sometimes they just don’t know the right words to say. Therefore, I’ve learned to let these comments roll off of me rather than be hurt by them.
  • Nurture your marriage:  The speech-language pathologist who specialized in CAS told us “take care of your marriage.” He had seen many parents forget about each other as their focus shifted more and more to their child. As a result of that sound advice, we’ve made time for date nights and have even taken two weekend getaways without our daughter since the diagnosis.
  • Set goals and celebrate progress: I asked the speech-language pathologist who diagnosed my daughter with CAS what the best-case scenario was for her by the time she reached Kindergarten. “The goal,” the SLP said, “is for her to be speaking like an average Kindergartener. She may still need speech therapy, but it’s my hope most people won’t be able to tell she has CAS.” This instantly became my goal too. As a result, I celebrate her speech-related accomplishments, even the little ones other parents might think are insignificant.
  • Be positive: Instead of focusing on what my daughter can’t say, I look at all of the things she can say. While I remain very real about the challenges that lay ahead, I choose to celebrate her growth, rather than bemoan her struggles.

So yes, my One Little Word for this year is promise. Thanks to early interventions, a great team of service providers, and the Kaufman Speech to Language Protocol, my daughter is at-promise to succeed. She works hard during her therapy appointments to increase her speech productions. I weave home-practice into play and daily routines.  I also make time to head outdoors, sing silly songs, and have dance parties. Each time my daughter adds another word to her repertoire, I celebrate. I’ve lost count of how many words she speaks, which means her language is developing nicely. While not everyone understands her words, our family does and that’s what matters the most. In time, other people will understand her too.

I look forward to 2014 being a promising year for my family, and to the promise of a bright, loquacious future for my daughter.

Created with Visual Thesaurus, http://www.visualthesaurus.com/app/view.
Created with Visual Thesaurus, http://www.visualthesaurus.com/app/view.

Stacey Shubitz View All

Literacy Consultant. Author. Former 4th and 5th Grade Classroom Teacher.

34 thoughts on “Stacey’s One Little Word for 2014 Leave a comment

  1. Thank you for this post! I absolutely love it. Cooper hasn’t been diagnosed yet with Apraxia but I believe that is what he has. Either way it is a very hard road. I love your hope. Thank you for sharing it!

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  2. Stacey,
    What a beautiful story! I always smile when I stop by your personal blog and listen to audio clips of your daughter. It always takes me back to when my children were younger. Now I realize how much of a celebration every one of those clips must be.

    I enjoyed reading your thinking about your word, but I’m especially glad you put in time for yourself. I think we often forget that part.

    Cathy

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  3. Stacey,

    My son (now 11) was diagnosed with CAS at age one and it was definitely a difficult path as a parent. When he finally said his first word, it was a halting duh-oh-guh (dog) for weeks. It didn’t even sound like a word – rather it was three unblended sounds. I remember feeling overwhelmed and wondering how he would ever learn to talk in that manner – sound by sound.

    My son is in sixth grade now and last received speech therapy in third grade. His speech sounds normal. 🙂 I just thought you might like to hear a success story. Hang in there.

    Michelle

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  4. Your honesty and commitment to your daughter, your family, and your faith have been clear to me for a long time; however, in this piece, you share your soul and your promise. Izzy is not only adorable, she is one very lucky little girl to have a family that will not only come to bat for her, but will PROMISE to see her through all the trials and tribulations of life. Thank your for the reminder of the PROMISE of motherhood.

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  5. Love your word! Your story is powerful! It sounds like you are already fulfilling the promise! Keeping you in my thoughts as you keeping making steps in your journey!

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  6. In addition to the wise words you’ve written, I also applaud you for learning so much that you can also take on the therapy in an organic way, right at home, doing it within Isabelle’s routine. I imagine that has made a huge difference in her development too. So often parents rely on experts, & I love the commenter above that says to also rely on your own instincts. You and your husband know Isabelle the best of anyone, & you’ll love her for who she is always. How brave to share this here, Stacey. I’m sure others will benefit from that courage. Finally, it’s great you started your own group. What a benefit to others as well as you. Best wishes as you travel on!

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  7. Thank you so much for sharing. I would like to suggest you also promise to continue to research the condition and to trust your gut (not necessarily your heart). Our oldest was diagnosed with Albinism at 3 months. We were given worst case scenarios: he may need braille, he will probably never drive, he probably won’t….. We started at Easter Seals and they kept trying to find things that might be wrong. There are wonderful organizations, but always wondering if the behavior is because of a genetic condition or because of personality drove us crazy. We appreciated that the “experts” were only trying to help but, in the end had to trust our instincts on a lot of things. When he pointed out a double rainbow at 3 we decided at that moment never to say he wouldn’t be able to something. He is now a straight A student in honors classes and on his High School archery team. You have it exactly right when you say your daughter HAS C.A.S. — it is not who she is. And with loving parents she is already successful and will achieve the potential God has planned. Prayers for continued strength and wisdom.

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  8. I appreciate your candor and the organization of explaining Izzy’s diagnosis. Many young parents will hopefully profit from reading your wonderful story. It will help someone else who is worried for some reason about their child seek early intervention. I love the whole idea of music therapy along with the speech. I believe that oral language is at the heart of many of our young reader’s struggles. Izzy is very lucky to child to having such loving and positive parents. xo

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  9. What more can I say that hasn’t been said? This was an important piece to write and share. It came from your heart. Your word will continue to support you even when the year is over, but meanwhile it will remind you of what is most important every day.

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  10. Stunning, Stacey. Your bravery in sharing your story will surely help so many in this community. As a new parent, I will live by your advice to adore my child for who he is, to define success independently of others’ judgements, and to celebrate the small miracles of daily life. Thank you so much for sharing.

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  11. This emotional and powerful. I can feel the anticipation of every new word that your daughter speaks and the celebration that follows. There is such promise for the future. Thank you for your honest words.

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  12. What a heartfelt piece. I love how you took us through the journey. We are outside looking in and you set that up perfectly in the first portion. It made me feel like at one time you may have felt like you were outside looking in on someone else’s life. No one can understand the impact of CAS without living it. I have watched a little girl struggle with this disorder over the past two years, but for her it has been life long. She never gives up. You and Izzy will never give up either. Your commitment to her success is teaching her so much more than how to communicate. Bravo on being brave!

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  13. Thank you for sharing your journey that ends in PROMISE! When you write about Isabelle, a little girl who is “daring, humorous, loving, caring and driven” comes through. You deal with the challenges but celebrate the wonder that she is. You are a wise and loving Mommy, Stacey.

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  14. Stacey,
    Thanks for sharing. I know how hard it must have been to write about your daughter’s diagnosis and what it’s like to do speech therapy with her day in and day out. I think promise is a perfect OLW for 2014. Promise is always positive, which you are striving for under your current challenges. Success comes with promise, I think, because your energies are bring used in the right place and the New Year will reveal this to you in due time.

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  15. So beautifully written, Stacey. One of my dear college friends recently shared with me her daughter’s diagnosis of CAS, and so I felt like I may have possibly gotten a glimpse into her world through yours. I have shared this with her as well, in hopes that she will know that she is not alone on this journey, surrounded by only those that don’t really “get it”. Thank you, so much, for being vulnerable with our community and sharing so beautifully!

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    • I should’ve added another principle when I wrote this. I guess it’s not too late, but I’ll leave it here in the comments. The sixth one is FIND A SUPPORT SYSTEM. Our family has been incredible, but it takes more than just your loved ones to help you through something like this. There wasn’t a support group in our local area so I started one. We’ve met twice so far as adults and we’re getting our kids together for a group play date and dinner tomorrow night.

      Please tell your friend CASANA has an online support group through Facebook. I joined as soon as I had the diagnosis for my daughter. That’s an incredible resource as well.

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  16. Thank you for being so open and sharing with us an important story about your life. I think promise is a great OLW and I’m looking forward to reading how this word takes shape in your year. I love the list you wrote of things that you promise. Your words are so powerful and moving. 🙂

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  17. I agree with Bonnie’s comment that this is one of the most powerful pieces you have ever written! Thank you so much for sharing your story with us. 2014 is going to be a year filled with promise.

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  18. Stacey,
    It is a privilege to read your post. Your love for your daughter, your family and traditions is always present in your personal blog. Your passion and expertise as an educator has guided me in your many posts at TWT. This post says so much more. It took great strength and courage to write this, but also generosity. Sharing your experience, your lessons, and how you go forth with promises to keep gives so much. This quote: “You must love your child for who she is, not in spite of what she has” are powerful words that all parents and teachers need to take to heart. Your commitment is paying off and will continue to. Thank you for your words today. They will live with me as a parent and a teacher.
    Julieanne

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  19. It took great courage to write this post, Stacey, especially with such raw honesty. Our journey in parenthood is filled with much joy and many challenges, and we live in a culture that stresses celebrating the joys and hiding the challenges – especially when it comes to our children. But you have faced your challenges with bravery, and sharing your daughter’s story with us is a brave act. Your daughter is so lucky to have been gifted with parents who love and cherish her, and have the wisdom and courage to guide her so that she might fulfill her life of promise. As Bonnie says, with are with you…thank you for sharing your journey to your one little word that means so very much.

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  20. Your post touched me deeply. My little cousin doesn’t speak. She has been through the gamut of tests. Her parents are committed to her as you are to your daughter. While they have not told me she has CAS, that is what I suspect because everything else about her is normal. Everything you wrote here resonates with me. What a beautiful mother you are. I am sure your daughter will thrive in the environment you provide for her. Thanks for sharing such a personal journey.

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  21. Thank you for sharing your story. It takes more courage than average to expose our children’s vulnerabilities The instinct is to protect your child by minimizing their challenges. Your daughter is very lucky to have you as a mom. Your post reveals great love and great balance. I wish you a year filled with promises realized.
    Bernadette

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    • Perhaps that’s why I waited so long to share this, Bernadette. I didn’t share information about her diagnosis publicly out of respect to her future self. However, I really think I didn’t share it now because I didn’t have the right words and because wanted to minimize the fact that this was a challenge for us as a family. (We were also so in the thick of things for such a long time. It’s only in the past two months I’ve started to feel like we’re making progress.) However, not writing about it at all didn’t work, so last March I began blogging about it on RALH by getting into the proverbial pool very slowly. While it’ll never be the sole focus of my writing about my daughter, it is part of who she is. There’s no reason to hide it. I’m not ashamed of her or of her diagnosis. It’s just part of our lives now.
      Thanks for your kind words about the “great love and great balance.”

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  22. Stacey,
    Thank you for being brave and sharing this very personal side of you and your family’s life! I wish you all the best as Isabelle continues to make progress. I pray for your strength and tenacity as a mother and wife. May God guard and guide your steps as you move through this New Year with your OLW!

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  23. Stacey, Thank you for sharing your story. Promise is a powerful word and in the hands of a powerful woman like you…I know your family will enjoy that promising future. Thank you again! I’m humbled to have had the opportunity to read this story of your life. Thank you for inspiring me on this dark, cold, early morning.

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  24. This is one of most powerful pieces you have ever written, Stacey. I applaud the power of your words and your willingness to be open and vulnerable with the world. I have been reading so many posts about the OLW and your word and what you are doing with it speaks volumes about you and your commitment to your family and your world.
    We are with you,
    Bonnie

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