As my son, Leo, has grown, his developmental delays have become increasingly apparent when compared to his peers. The most significant challenge he faces is his inability to speak, which can often feel heartbreaking for our family. We wonder if we will ever hear his sweet toddler voice and if he will sound like his little brother, Max, who is just two years old. Each time I hear Max calling my name, it brings a mix of joy and sorrow. It’s a complicated emotional landscape we navigate as a family. How can I truly cherish these moments while yearning for that special moment with Leo?
Leo, who has autism, also struggles with childhood apraxia of speech (CAS). Interestingly, many people are less familiar with apraxia than they are with autism. Leo desperately wants to communicate, but his motor planning difficulties hinder his ability to articulate words or sounds consistently. This neurological disorder means his brain knows what he wants to say, but he struggles to coordinate the movements necessary to produce the correct sounds. There’s a disconnect between his thoughts and his mouth.
To help Leo communicate, my husband and I decided to introduce sign language. He learned two essential signs: “more” and “all done.” Mastering these signs was a game changer for us all. Before this, Leo couldn’t even shake his head “yes” or “no,” making it a guessing game regarding his needs and desires. With “more” and “all done,” we received a glimpse into his wants and needs at that moment.
Recently, Leo started using the sign for “more” to express “I want.” For instance, when he signs “more” while enjoying a cookie, we know he wants another. But if he points to the bathtub while signing “more,” it indicates he wants a bath. These distinctions highlighted the need for more effective communication tools.
The options available can be overwhelming for any parent. We constantly question ourselves about choices, from birth plans to which after-school activities will best suit our child. As parents of a child with special needs, these decisions seem even more consequential, and time is always of the essence. What if we wait too long? What if we act too quickly? The pressure of time adds another layer to our decision-making.
After much thought, my husband and I developed a communication book with Leo’s teacher. We wrestled with doubt, wondering if we should just wait a bit longer to see if he might begin to speak. But how long can we let Leo go without a way to express himself? It wouldn’t be fair to deny him a better form of communication while we cling to hopes that remain unanswered.
We filled this book with real photographs of everyday items—his favorite cookie, specific juice brands, beloved toys, and even pictures of our backyard, bathroom, and his bedroom. This book contains around 20 pages of small, laminated images attached with Velcro. Initially, Leo could only look at six pictures at a time. Just scanning through the book was an achievement in itself. Now, he can flip through the pages, choose what he wants, and hand me the picture.
It saddens me to realize how long he may have felt trapped within his own thoughts, unable to communicate his needs. Like all parents, my husband and I do our best, and I like to believe I’ve accurately guessed Leo’s needs over the past few years. However, now that he can select what he wants to eat, which toys he prefers, and where he wants to go, I doubt I would have chosen half of what he presents to me daily.
A recent home therapy session revealed just how far Leo has come. While my husband and I were in another room, Leo was crying with his ABA therapist. It was evening, and he had a long day filled with therapies and activities. He normally wakes early for school, so by the time he comes home, he often just wants some time to relax. But today was different. Today, Leo had his communication book.
He flipped to the last page, which featured pictures of me, my husband, his brother, and his aunt. To our amazement, he first handed his therapist the picture of my husband and then mine. For the first time, Leo used his communication book to ask for his parents.
At just three years old, he could have requested anything—ice cream, a turn on the swing—but instead, he asked for mom and dad. It was a poignant reminder that, like any other child, he craves connection and comfort from us. Even as he reaches out to us when he needs support, it’s a different experience when he actively communicates, just like everyone else. In that moment, we allowed ourselves to savor this bittersweet reality just a little longer.
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Summary
This blog discusses the emotional journey of a mother navigating her nonverbal son’s developmental delays and communication challenges. By introducing sign language and creating a communication book, the family discovers new ways for their son to express his needs and desires, culminating in a touching moment when he asks for his parents for the first time.