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When the Words Don’t Come Out Right :: My Journey, Her Disorder

Two and a half. That’s the age we decided we’d have our daughter’s speech evaluated if it hadn’t gotten better.

Sure enough, two and half came, and in the parking lot of a shoe store, I made the call I didn’t want to make. The pathologist asked me all sorts of questions about her language patterns. After fumbling through most of the answers with “Well, sometimes? Maybe?” she explained the three types of speech patterns. I don’t remember the names of the other two, but the one I recognized is the one I knew described her. 

Apraxia. 

She explained this category was usually just a catchall for kids who don’t exhibit a specific language pattern, and it would take some time before we knew for sure. She warned me against Dr. Google and assured me that apraxia is not as scary as the Internet would claim. In the way that autism includes a wide array of intensity and functionality, so does this disorder

We hung up, and I sobbed. I want to pause here because there are a LOT of emotions wrapped in my reaction, and for the sake of transparency, I don’t want to gloss over it. 

I have always wanted a girl. As a matter of fact, I wanted a daughter so much that I was incredibly and deeply saddened when I found out my firstborn was a boy. (This truth is something I am 100 percent ashamed of. I am beyond in love with my son and hugely grateful he came first. Just so that’s clear.) When I found out I was having a girl the second time around, my life felt complete. The world outside could’ve caught aflame the moment she was born and I would’ve been content. 

I had my heart’s desire . . . but she was broken. And that destroyed me. 

We knew pretty early that our baby girl was different than her brother. Her newborn phase was HARD. Breastfeeding was a struggle, and she didn’t sleep much those first three months. She screamed when she was awake, and she screamed when she was supposed to sleep. How little she interacted with other people was also concerning. No matter how much excitement they put in their eyes or how high-pitched their voices, she was never impressed. 

Then around three or four months, a switch flipped. We got the right body workers and the right lactation consultants, and life was looking up. Girl-mom life had begun. We enjoyed sweet cuddles and snuggles our son didn’t offer. She grew into a toddler who loved Disney princesses, tutus, and costume jewelry. But her words never really came. And the ones she had seemed to disappear.

The evaluation was . . . painful. Each question, each activity made her disorder even more glaringly obvious. Our girl needed help, big help, and there was now no doubt in my mind. I cried that whole afternoon, a mixture of tears of sadness, grief, and gratitude for the answers we didn’t want, but absolutely needed.  

Progress

My daughter has been in speech twice a week for seven months. A lot has changed in a short time. Her speech has made tremendous progress. While we could only understand about 20 percent of her words before speech, we can now understand about 85-90 percent. The most rewarding change has been the percentage that non-family members can understand. And can I add, the excitement our friends show when they understand her means the world to me! Our village is the best.

As for me, I no longer fight back tears every time someone asks me about her speech. I wondered in the beginning if I would ever stop crying about it. And I have, for the most part. The urge to immediately announce her disorder to everyone has also mostly disappeared. Although, I still have to talk myself out of feeling judged for her slurry words and jumbled sentences. We don’t owe an explanation to anyone, although I will happily give one if asked.

Most important, I know my daughter is not broken! She is an incredible little person with the willpower of an ox. She works her butt off in therapy and doesn’t let her diagnosis get in the way of living her best life. Honestly, we should probably be a little afraid for when she’s completely untethered. 

Limbo

While there has been great growth, there are still a lot of unknowns. We don’t know the cause, and probably never will. Nor do we know how much longer she’ll need therapy. Most likely, though, several more years. Apraxia is not a speech delay. It is a complex motor speech disorder. It’s not just about phonetics. It’s about her brain and mouth working together to plan and execute her words properly. Speech therapy for her isn’t just sounding out the letters slowly and precisely. Her therapy is filled with word repetition, association, and pronunciation. Some days we’re on top of the world, others not so much.

I don’t know what school will look like for my daughter. But I do know we have two more years of speech before that is a present concern. We are exactly where we need to be right now, and that is all we can control. Her pathologists are incredible, and I trust them wholeheartedly. I appreciate and applaud them for their expertise and hard work.

We will get through this. That, I know!

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One Response to When the Words Don’t Come Out Right :: My Journey, Her Disorder

  1. Kelly July 5, 2018 at 8:32 pm #

    Cate, you’ve got this! So happy for the progress Nora has made! Yay for Carter Therapy. From one mom of an apraxic daughter to another, big hugs!!

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