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Living in Silence

Parenting Through Childhood Apraxia of Speech

By Christine HoldenPublished 6 years ago 5 min read
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Imagine for a moment, you ask your 2 year-old to say Apple or Mommy. Son, would you like some More Wah-Ter? Say Plee-ease. Now imagine that you won't hear him say these words until he is almost 5 years old. He is quiet and will often not engage in eye contact for fear of being spoken to and to have to reciprocate. Not even a simple Hello. How long had I waited for him to say Mommy or say that he loves me too.

My son, Kane, has Childhood Apraxia of Speech (CAS) and was diagnosed at 2 years old. When asked how he compared to other toddlers with CAS, I was told his speech was severely unintelligible. They didn't tell us anything we didn't already know as we had a very difficult time understanding him. CAS is neurological speech disorder that affects a child's ability to plan, program, execute, and sequence the precise movements that are necessary to produce intelligible speech. Kane has been in speech therapy since he was 18 months old.

I may have wished for a perfect child who was above average in all his pursuits, but I have a child full of whim and vigor, a child who needs to overcome his obstacles and understand that not everything is easy-peasy in this life. When I look back to the beginning of our Apraxia journey, and it remains to be a journey, it was filled with highs and lows. Lows so low that I would allow myself to be scared and defeated. As a parent, there is shame and guilt in that. This journey is a reminder of the wholesome happy moments that really have nothing to do with Apraxia and more about being a mother, a child, and a family.

Raising a child with this disorder is both a challenge and a blessing. A challenge for obvious reasons, and a blessing because you don't know the depths of his successes and happiness until you see him overcome some of those challenges. I worry about his future and I am sad thinking of the hurts he's endured and would have to feel for not sounding/speaking like everyone else in what's often a harsh world.

After the diagnosis, I had a better perspective and as scared as I was after trolling the internet, I learned to be critical. There are a lot of great resources on the internet but many are not-so-good! Would my child ever be able to talk normally? Is my child permanently disabled? Thatwas the time for me to put on my proactive parenting cape and start gathering any and all information I could, picked his SLP's (speech language pathologist) brain, endeavored to work with him at home, in the car and everywhere in-between. Yet in the meantime, we dealt with so many quizzical looks, unwanted advice, and clueless peers.

What I wish I told his previous teacher who told me, "Oh, don't worry. Some kids are late-to-talk. He'll catch up. Maybe you aren't reading and singing to him enough? Do you go to Mommy-and-me classes so he can interact with other kids?" Luckily, we found a preschool Montessori where his teachers and administrators have a true passion in child development.

There are an abundance of people who make Kane's journey full of happiness and provide opportunities to build his confidence, but in the beginning, it took some time to find our tribe. My support system was not always what I had imagined. There were parents who were, with intent or not, quite cruel and insensitive. Some who purposely kept their children away from interactions with my son. Their actions unfortunately reflected onto their children. My hope is that parents do not miss these opportunities to teach their children compassion and kindness.

People often ask me to describe what I've learned as a parent of a child with CAS and now that I have a bit more perspective and experience, I wish I had started explaining Apraxia better to others but who has time for that?! Others hopefully will understand it's a lifelong diagnosis, not an easy fix.

On Facebook, I connected with a network of parents in the same shoes and even young adults with Apraxia, and I've never been so happy and relieved to do so. I met a lovely young woman who has Apraxia, 18 years old, who dedicated a video on YouTube for parents of CAS. On this video, she was preparing for University and spoke eloquently about her successes. I teared up at how articulate she was and how well she explained what I, as a parent, always worry about: will my son celebrate the same milestones as his peers? This young woman's message gave me the extra strength I desperately needed and to celebrate the successes more than the setbacks! Joining the right network of people changed our journey.

Now that my son speaks, to the best of his abilities, most people believe his CAS in a non-issue. They are unaware of how many hundreds of hours he spends in therapy, something that won't be changing in the foreseeable future. Speech is not a "fix," and Apraxia needs do not with its emergence.

If your have a child with CAS (or any speech delay), I know it can be hard. Even though it is easier said than done, focus on what your child says when they don't say a word. Listen to what they show you. Live for the moments that cannot be defined by words because those are the moments in our lives that are the most powerful and lasting.

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About the Creator

Christine Holden

I'm a stay-at-home mom to 2 beautiful boys, one of which has CAS (Childhood Apraxia of Speech), and now expecting to welcome a third child this summer. I write about mothering through challenges and other amazing feats.

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