As my son Alex grows, the difference in his developmental progress compared to his peers becomes increasingly apparent. His lack of spoken language is the most significant and often the most heart-wrenching aspect. We frequently wonder if we will ever hear that sweet toddler voice and if it will sound like his little brother, Max. Each time I hear Max call my name, my heart swells with joy and sorrow simultaneously. It creates a bittersweet atmosphere for our family. How can I fully cherish those moments when I still yearn for that connection with Alex?
In addition to autism, Alex has childhood apraxia of speech (CAS), a condition that many people do not fully understand. While he is eager to communicate, CAS presents a motor planning challenge that prevents him from consistently articulating words or sounds. This neurological issue means that although his brain knows what he wants to express, it struggles to coordinate the physical movements necessary to produce the correct sounds. Essentially, there is a disconnect between his thoughts and his speech.
To assist Alex, we decided to introduce some basic sign language. He has learned two signs: “more” and “all done.” Mastering these signs was a transformative moment for all of us. Alex has never been able to shake his head to indicate “yes” or “no,” so we’ve relied on guesswork to interpret his needs. However, with the signs “more” and “all done,” we gained insights into his wants and needs.
Recently, Alex has begun using the sign for “more” to express “I want.” For instance, if he is eating a cookie and signs “more,” it’s clear he desires another cookie. But if he points to the bathtub and signs “more,” he is indicating that he wants a bath. These distinctions in his communication highlight the need for more effective ways for him to express himself.
There are countless communication tools available, which can be both exciting and overwhelming. As a parent, I often grapple with self-doubt regarding the decisions I have to make—from choosing a birth plan to selecting after-school activities. As parents of a child with special needs, the pressure amplifies; we worry about the timing of our choices. What happens if we delay? What if we act too quickly? The ticking clock always looms large.
This year, after considerable thought, my husband and I collaborated with Alex’s teacher to create a custom communication book. There was a lingering hope that if we waited just a bit longer, he might begin to speak. But how long should we allow Alex to remain voiceless? It’s unjust to deny him a more effective means of communication while clinging to a prayer that feels unanswered.
We gathered real photos of items he interacts with daily, such as his favorite cookies, specific juice brands, toys, and even pictures of our backyard and bathroom. The book has about 20 pages filled with tiny laminated images attached with Velcro. Initially, Alex was only able to engage with six pictures at once, but now he can flip through the pages and select what he wants, bringing the pictures to me.
It’s both uplifting and heart-wrenching to think about how long he was trapped in his own mind, unable to express his needs. My husband and I strive to meet Alex’s needs as best we can. While I like to think I’ve guessed correctly most of the time, it’s a revelation to see Alex choose what he wants to eat, play with, or where he wants to go. Often, the items he selects surprise me.
During a recent home therapy session, while my husband and I were in another room, Alex became upset with his ABA therapist. It was an ordinary evening; my husband typically wakes Alex before dawn to prepare him for a full day of school and therapies. After a long day, Alex often craves rest, just like anyone else.
However, this day was different. Alex had his communication book. He flipped to the last page featuring images of me, my husband, his brother, and his aunt. To our astonishment, he removed the pictures of both his parents and handed them to his therapist. For the first time, Alex had used his communication book to request his mom and dad.
At just 3 years old, he could have chosen anything from the book—ice cream, a turn on his swing—but he opted for his parents. This moment underscores that he shares the same desires as any other child; sometimes, all he needs is the comfort of his mom and dad. As a parent, this validation is incredibly meaningful. Although Alex reaches out to us when he needs comfort, knowing he’s trying to communicate in a way we understand feels profoundly different. In that moment, we allowed ourselves to relish the bittersweet reality of our lives just a little longer.
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Summary
In a heartfelt narrative, a mother reflects on her journey with her nonverbal son, Alex, who faces autism and childhood apraxia of speech. As she shares their struggles and triumphs in communication, a pivotal moment arises when Alex uses a communication book to request his parents, highlighting his desire for connection like any other child. This bittersweet experience underscores the importance of effective communication tools for children with special needs and the deep emotional bonds that parents cherish.