Apraxia Awareness Day 2023: Caiden’s Apraxia Journey

On Caiden’s third birthday, hot tears of disappointment and frustration adorned my cheeks like sprinkles on a cupcake. You see, Noah, my 5 year old, had been saying for months, “When Caiden turns 3 years old, he’s going to talk like us! When he’s 3, he’ll speak just like me.” The child-like faith that has been instilled in me for generations was stirred by his words. And while I fully understood that speech delays don’t work like that, my child-like faith experienced child-like disappointment when God’s answer to Noah’s plea was a gentle, “Not yet.” I can still see the Thomas the Train birthday banner I was hanging above the window as I cried in annoyance with Caiden, who desperately needed something from his mama, but try as I might, I couldn’t understand his words. Desperately, he told me over and over what he wanted. I would guess and get it wrong, and he would cry harder. I would ask Noah if he understood what his brother was saying. More often than I care to admit, Noah would translate for us. It seemed like he understood Caiden better than the rest of us, and I felt both admiration and jealousy of this brotherly bond. If Noah didn’t know, we would play a broken and distressed version of charades – until Caiden either gave up or we guessed correctly. All five of us were exhausted, Caiden was desperate for connection and communication, and God answered our prayer with “Today isn’t the day that Caiden’s speech will suddenly catch up and be corrected. Not yet.” My tears blurred Thomas and Percy’s smiles as I finished securing the birthday banner.

Most days were like this. When I think back to Fall 2022, my memories are a blur of sick kiddos, attempting to help Noah adjust to kindergarten, balancing going back to work with 3 kids, communication that consisted only of a series of broken syllables, grunts, and pointed fingers, watching people misunderstand Caiden’s speech, speech therapy appointments with goals that remained unmet for months, reminders of “use your words” and “move your mouth when you speak,” and more tears than I could ever count. Caiden spent most days angry, sad, anxious, or frustrated. A lot of nights I went to bed tired and teary eyed, discouraged and disheartened. What kind of mom can’t understand her own child’s voice? What kind of mom must I be if Caiden doesn’t even want to talk to us? How could I have prevented his frustration today? Should I have read to him more when he was a baby? Most of the first 2 years of his life, we wore face masks due to COVID. Could this be the reason he’s struggling with speech? I would pray nearly every night, God, make this easier. Make Caiden’s experience easier. Frequently, I would crawl into bed next to him and pray over him. I would text my mom after he had fallen asleep, “It’s been another hard day, please pray.” For her December birthday, Mom asked her trusted friends and prayer warriors to pray for Caiden during designated times of the day. In my own vulnerability, I asked our small group, some church members, and coworkers to pray alongside us for Caiden. I begged them to pray big and bold prayers on his behalf. My own heart echoed each day, Lord, make a way for him, make it easier for him; make it easier for us.

In January, I committed to spend every single day in the Gospels. With a plan each month to read Matthew, Mark, Luke, and John and record what stood out to me in each pass through. I’ve heard many of these stories hundreds of times in my life, but on this particular day, the story of Jesus healing a deaf and mute man stopped me in my tracks. 

“After he took him aside, away from the crowd, Jesus put his fingers into the man’s ears. Then he spit and touched the man’s tongue. He looked up to heaven and with a deep sigh said to him, “Ephphatha!” (which means “Be opened!”). At this, the man’s ears were opened, his tongue was loosened and he began to speak plainly.” – Mark‬ ‭7‬:‭33-35

I had heard that story told by dozens of pastors and Sunday school teachers over the years, but that day, hearing the words “The man’s ears were opened, his tongue was loosened…” felt like God saw my struggle in the same way that Jesus saw the struggle of the deaf and mute man: up close and personal. My prayers changed in that instant. I dropped the mascara I had been applying while listening to Mark’s words, so I could talk to Jesus. With clenched fists, I had been holding on to the prayer that God would change Caiden. But from then on, my new prayer was, “Lord, if You aren’t ready to loosen Caiden’s tongue, would You instead open my ears to understand him better?”

Later that month, I needed new language for what Caiden was dealing with as I completed an application for him to attend a day camp at the high school. “Speech delay” didn’t quite fit anymore for a 3.5 year old who spoke full and complete sentences, but words in his sentences weren’t understood by listeners. I brought my question to our kind and caring speech therapist who had been seeing Caiden consistently for 6 months. At this point, he had already been in speech therapy for over a year, but I truly believe the consistency of one therapist over the course of this season was evidence of God’s provision. His therapist tenderly told me that Caiden had consistently not met speech goals, and although he could follow directions incredibly well, he couldn’t recreate the words and sounds she would prompt him to say. She did an assessment that very day and explained to me that she suspected Caiden has childhood apraxia of speech, a motor function speech disorder.

That afternoon, I turned to Google. Until the day I was told my son had childhood apraxia of speech, I had never heard the term. I read descriptions of apraxia of speech in every variety, from layman’s terms to professional articles. I listened to podcasts from professionals, found a Facebook group for parents, and soaked up every bit of information I could. For a few days, we grappled with what this all meant for Caiden. We grieved a little. And then, like any mom on a mission, I got to work. While rocking Levi for a nap, I made a bulleted list on my phone of every step of advocacy Caiden would need from me–from obtaining documentation of his official apraxia diagnosis by his pediatrician to getting more resources for him to methods of better communication with him. I texted my list to Drew with the same urgency as a flaming arrow.  It was the first time I really realized our boy is fighting for his voice, and from that moment on, I refused to let him go to battle alone. Sweet Levi snoozed in my arms, unbeknownst that while he dreamed, his parents were applying their battle armor. 

Fast forward to today. Currently, we have increased our number of speech sessions per week, and Caiden will get even more speech therapy in the fall. The therapy he’s receiving is a specific therapy that is evidence-based in treating CAS. We’re now learning and using a ton of American Sign Language as a family. Caiden also has several “freestyle” signs and gestures that he has created himself and uses to communicate with us. We have entirely eliminated the phrases “Use your words,” “Move your mouth,” and “I don’t understand you,” from our vocabularies and won’t allow anyone else to say those things to him either. Caiden has received a grant to help cover speech therapy co-pays. Drew and I received a scholarship to attend an Apraxia Conference to learn more about what our boy is overcoming. I wish I could go back and tell myself at Caiden’s 3rd birthday that God’s “Not yet” that day was really more like a “Buckle up; your schedule is about to become very busy but just wait until you see the joy in the process. Also, strengthen up that patience muscle, Sis. You’re in for the long haul.” Maybe Thomas and Percy wouldn’t have looked so blurry if I could have known all of this then.

The Lord has been abundantly kind to answer my prayer request of opening our ears to better understand Caiden’s speech with a “Yes!”.  Most days I understand his words better than I did in the past and almost always better than anyone else around him. He’s happier now; he laughs more often. My boy attempts to speak more now than ever before, even when we can’t understand. Instead of crying, these days when he can tell a listener doesn’t understand right away, he says “Follow me!” so he can show them his needs. He combines speech with signs and gestures to better communicate his words. Recently, I sneezed, and when he said, “Bless you, Mama!” I nearly wept, because he had never said that before. Caiden works so hard at his speech every single day; his resiliency is truly outstanding. And as far as I’m concerned, there are few things in life cuter than a preschooler using sign language. Every day still has its own challenges with communication, articulation, and understanding, but I will be the first to confess that today is easier than Caiden’s birthday was. However, it isn’t lost on me that while Caiden has progressed and the hard work is his alone to claim, the Lord first had to humble me to realize I was a work in progress, too. My desire for “this” to become easier wasn’t met until I stopped asking God to change Caiden and instead, asked God to change me.

Caiden’s apraxia diagnosis has opened doors for him and for Drew and me, as his advocates. We now have language to better understand the challenges he faces, support groups where we glean wisdom from families further down the road than we are, and a therapy team who sees Caiden’s strengths and weaknesses and knows he’ll want a blue sucker after his session. But it would be unfair of me and unfair toward Caiden to wrap this up with a pretty bow. The Lord has answered some of our prayers with a “Yes,” but He’s answering many of our prayers with a “Not yet.” YES, Caiden is making significant progress, and yet his speech is over 50% unintelligible even to a familiar listener AKA his own parents. YES, our boy is resilient and yet how tired he must be of repeating himself. YES, I see our boy who is happier and more confident than he was six months ago, and yet I know he still has an uphill battle for every sound and syllable that is second nature to us. YES, I will sing along to “Christ be Magnified” when it is played during worship at church, and yet I will cry through the opening line: “Were creation suddenly articulate” because sudden articulation was my literal prayer for our son not too long ago. YES, doors have opened for Caiden and yet the key to those doors has been plans of care and IEP paperwork that make my eyes burn with tears. YES, childhood apraxia of speech isn’t something I would have wished for Caiden and yet naming what he’s facing has answered prayers that I didn’t even know I had. YES, the Lord has opened my ears to better understand my boy, and yet today isn’t the day he has quite loosened Caiden’s tongue. 

Not yet.

So we will wait. Like Abraham and Sarah waited for a promise to be fulfilled. Like Hannah waited for her own little boy. Like Joseph waited in prison: with purpose and without bitterness. Like Elizabeth and Zechariah waited for the forerunner of Christ, but no one ever mentions the impatience they must have felt waiting for the return of ol Zech’s voice, and I can’t help but empathize with Elizabeth–waiting for the voice of someone you love is a really hard wait, too. . .

We will wait, but we will praise Him in the waiting.

“Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.” Philippians 4:8

“I will extol the Lord at all times; his praise will always be on my lips.” Psalm 34:1