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