Exactly 16 months ago I Googled “brain speech disconnect” and learned about apraxia for the very first time. In that moment, I remember standing in the kitchen thinking “God is going to make me an advocate.” It’s a role I didn’t want and still one I don’t fully understand, but one I will do my best to fulfill because I have a brave warrior named Emery who is worth it.
Additionally, just like sharing my postpartum journey one year ago today, I know there is another momma out there with all the feelings I’ve had. These truths are for her to tuck into her heart for when the days feel tough.
The good, the bad and the less than pretty…
In January we learned that our favorite little guy has Childhood Apraxia of Speech. The short definition is exactly what I Googled – the neuro pathways from his brain to his mouth have not been established. There’s a disconnect that we’re working hard to… well, connect. There is no comprehension delay, just an inability to verbalize speech.
I could share our entire speech journey with you down to the detail (and I’m happy to if you’re really interested!) but I don’t know how much value that would provide. Instead, I want to share parenting lessons I’ve learned along the way. All of these hold true no matter your child’s development – apraxia, speech delay or any milestone whatsoever.
So here we go with a peek inside my heart the last two years. Moments I’m proud of and moments I wish I could take back. I’ll give you a spoiler alert as you read through this – we’re 4 days away from his third birthday and we are in a GOOD place. He still has only two words (ma and da) and I am telling you, we are in a GOOD place!
Lesson 1: Trust your Mom Gut
I first questioned the possibility of apraxia 16 months ago when Emery was just 20 months old. It took over a year of spinning our wheels in traditional therapy to receive a formal diagnosis. In the time that passed I had MULTIPLE professionals tell me there was no way it was apraxia for various reasons. I respected them and their reasoning (and quite frankly was relieved because it meant a shorter journey for us). But as time passed, I couldn’t shake the feeling that we had more on our hands than a traditional speech delay.
I kept reading and researching (in a healthy manner) and praying for God to give me that momma intuition. Thirteen months into traditional speech therapy, our therapist brought up apraxia and agreed all the signs were there.
Long story short, we progressed through the next few weeks quickly – finding a new therapist who specialized in apraxia and scheduling an evaluation. Within 15 minutes of meeting Emery she turned to me and confidently affirmed what I had believed in my gut for a long long long time.
No one knows your child better than you. Fight for them. Keep fighting for them. Respect professionals and value their advice – but please, please, please trust that motherly instinct. God gave it to you the day your little one was born.
Lesson 2: Stop Comparing your Journey
I spent a lot of time in the early days calculating ages in my head. “Did he do this before or after so and so?”
As parents, we so often hold ourselves accountable for the milestones. When they start crawling or walking months earlier than their peers, we pat ourselves on the back certain that our parenting was the catalyst. We parade our child around like a prized pig, touting them as “advanced.”
Or when they don’t hit the mark… we blame ourselves for the delay.
When it comes to milestones, STOP COMPARING! It does not matter who crawls first, walks first or talks first. Developmental milestone ages are offered as a metric tool – not a trap to induce fear, worry and disappointment.
My husband and I had our knife wrenching wake up call one evening as he and Emery sat on the kitchen stairs. Emery grunted and moaned with outstretched arms for his new headphones we purchased for an upcoming trip. Both tired of the whines and certain he would have no comprehension of what we were saying, Matt asked, “Emery, can you say headphones?” The smile on his face instantly disappeared as he slowly shook his head “no”. “Emery, do you want to talk?” It was all we could do to hold back the tears as he sadly looked down and nodded his head “yes”.
Even at 21 months, Emery didn’t need us to remind him he wasn’t doing things that other kids his age were. He didn’t need us to constantly worry and wonder what we’ve done wrong as parents. And he definitely didn’t need our disappointment when milestones didn’t happen as planned.
All he needed then – and now – is us.
He needs us to be his cheerleaders. He needs us to be an example of being proud of who you are and celebrating every win. He needs us to teach him how to keep going even when you can’t see a light at the end of the tunnel. He just needs us.
The biggest frustration with apraxia is also the greatest blessing. We don’t have finite answers as to “when” the speech will come. It’s frustrating because sometimes we feel like we’re on a never ending journey. Alternatively, there is no need to worry or dwell on it! We just don’t know! This lack of information keeps us from comparing our journey with other families.
Lesson 3: Check where you’ve placed your hope.
Initially after reassessing the possibility of apraxia with our therapist, we decided to continue with things as normal. There was question of whether Emery would be receptive to a different type of therapy, plus the reality that we just had a long road ahead of us and progress would be slow regardless. It was the whole “keep doing what you’re doing” thing.
But I wrestled with that greatly.
Do I wait (on God) for Emery’s voice to arrive or do I act? I wanted to fully trust that God would ignite Emery’s voice in His timing. Would I be doubting God’s faithfulness if I didn’t just wait? I also knew there were other approaches and therapists available – would I be a bad steward of resources if I didn’t pursue them? I was SO torn between what I was suppose to do.
I shared it all with my husband and we both prayed about it. The answer we received… it didn’t really matter whether we waited or acted. It mattered where we put our hope. For our situation, we felt confident that God wanted us to act as long we continued to keep our hope rooted in Him – not our doing, not a person, not a therapy.
Placing our hope in any of those places (though valuable resources) would leave us disappointed and deflated. They offer false hope. But, hope rooted in the Lord is deep and fulfilling. It’s recognizing that you trust His plan – even when you don’t fully understand.
So, mommas. You have a lot of decisions in front of you on behalf of your kiddos. Through them all, keep a tight tether on where your hope is anchored. It will show you so much and offer the peace and direction you need.
Lesson 4: Celebrate what they CAN do!
When we focus on inabilities, we discount all of the traits and strengths that make a person who they truly are.
I gave way too much thought to Emery’s delay for far too long. I let it serve as the reason to everything we did… or didn’t do. A lot times it felt like the main character of our day. Or, I wanted to make sure everyone knew our situation so I didn’t look like a bad mom when the grunts and whines emerged.
On a family adventure to Morris Island Lighthouse one Saturday, I watched my little guy embrace his strengths in ways I’d never noticed. As we got down to the beach, he darted for a huge pile of rocks. Having never been there before or ever seeing a similar pile, he knew exactly what to do: climb.
Emery is a natural explorer. He’s an adventurer. His energetic spirit fuels a vivid imagination.
We can either focus on what our children haven’t accomplished, or celebrate everything they CAN do.
Once we started celebrating, our days and conversations looked much different. Apraxia and therapy are still part of our story, but they don’t define it or him.
Emery’s adventurous spirit, active imagination, evolving sense of humor and servant’s heart are the things we celebrate. These traits are the basis for stories we share at the dinner table every night. In all honesty, we don’t talk about speech or apraxia much these days. Why? Because we know God and our little warrior are far greater than them.
As important as it is for us to celebrate our children’s capabilities as parents, it’s equally important to teach our little ones to do so themselves. Emery will become more aware of the challenges and setbacks in his speech as he grows. I want to do our part now to encourage him to be proud of who he is and all of his many strengths that make him the incredible little boy we love so dearly.
Lesson 5: Time keeps ticking
Time is a funny thing. You spend half of your life trying to speed it up and the other half hoping to slow it down. But in the end, the seconds beat by at an unchanging pace. ⠀⠀⠀⠀⠀⠀⠀⠀⠀
We let ourselves believe that once they reach a milestone, life will be easier for a slew of reasons. But we have to remember that in every season there will be things we miss and pieces we’re glad are long gone.
I think about this often in regards to speech.
Once he’s talking we’ll get to hear his sweet voice for the first time, learn what’s going on in that little head and hear all about his school day. (Hopefully we’ll cut down on some of the frustrations, too!)⠀⠀⠀⠀
But when that day comes, we’ll also say goodbye to some really precious moments that won’t be necessary when he has words. ⠀⠀⠀⠀⠀
Like how he uses his entire body to show excitement. And incessantly nods his approval of his favorite things.⠀⠀⠀⠀⠀⠀
Or how we use the car ride home from Chick-Fil-A drive thru to practice speech therapy with waffle fries. He says “mmm pah” (more please) and gets another fry passed back.⠀⠀⠀⠀⠀⠀⠀
Or how he created his own language of caveman noises and signs to communicate his wants that only mom and dad can understand. It’s like our secret little code language.⠀⠀⠀⠀⠀⠀⠀⠀
Or how he just goes for it when he wants to help – he doesn’t wait for a “yes” to his offer. I pray that servant’s heart never fades!⠀⠀⠀⠀⠀
The joys of parenthood aren’t found in the milestones. The most memorable moments are found in the everyday life in between. Since we can’t get past seasons back, it’s best not to wish future seasons to arrive too soon either.
It’s taken a long time, but I’ve finally learned to enjoy these days for all the moments they hold. And let me tell you – it makes life so much sweeter!!
Bonus Lesson: God picked YOU.
I’m ending this post with the same words I shared a year ago in regards to my postpartum journey. They hold true now more than ever.
Out of the millions of women on the planet, God picked YOU to be the mother to that precious soul. He knew your strengths and weaknesses, the good days and the bad. He knew who your child needed in a mom (their advocate) and He picked YOU! When the days feel overwhelming or obstacles feel daunting, pray into this truth. He will give the guidance you need for your unique little one.
If you’re on a speech or apraxia journey and need a listening ear – I am here for you! Please feel free to reach out. I can’t promise I have the answers or advice, but I’m sure I can relate to what you’re feeling. You are not alone!
