When I was pregnant with my son, Oliver, I had a vision of motherhood that was decidedly different from the reality I now face. Like many parents, I imagined a lively home filled with laughter, books, and endless questions from my articulate child. I probably would have confidently said that he would be an only child, but surprise! While exclusively breastfeeding my little miracle conceived through fertility treatments, I found out I was pregnant again.
Fast forward a couple of years, and my life with Oliver is strikingly quiet. For someone like me—who has always been chatty and detail-oriented—the silence is almost overwhelming. Oliver was born with a condition known as Childhood Apraxia of Speech, and his situation is classified as severe. In essence, he struggles with motor planning; he comprehends everything and can even articulate the sounds of the words he wishes to say, yet a disconnect in his brain prevents him from coordinating the muscles in his mouth to produce those sounds. He is, in a sense, trapped in his own mind, yearning to express his thoughts and feelings but unable to call my name or voice his needs. This often results in him resorting to gestures, pointing, and sometimes crying out in frustration when he feels unheard. It breaks my heart to witness him give up on conveying what he wants or needs.
The future is uncertain. We’ve consulted numerous pediatric neurologists, speech-language pathologists, and other specialists. They consistently tell me that Oliver’s cognitive abilities are above average and confirm that he is not autistic—a fear I initially harbored given the frequent misdiagnosis of apraxia as ASD. Yet, the unanswered questions loom large: Will he ever speak? When will that happen? Will others understand him? Should we teach him sign language? (We do use some sign language.) Would an iPad communication app be beneficial? How can I ascertain if he understands written language? What about potty training a nonverbal child? Will he be able to attend a regular public school, or will he need a specialized education setting? Will he be able to form friendships? How much therapy does he require, and will insurance cover it? What causes apraxia, and could my other child potentially have it too?
There is also a deep longing to know the simple things about him: What ice cream flavor does he like? Does he prefer milk or water? What is his favorite color? Is he feeling okay? What makes him cry?
I don’t want this to come off as self-centered; my focus is entirely on Oliver. In fact, I often have to remind myself to give my younger daughter, Lily, her own experiences, like music classes or playdates, since she often tags along to Oliver’s many appointments. I grieve the thought that, as they grow, she may end up needing to advocate for him, speaking on his behalf when he cannot communicate his desires or feelings to the world outside our home. It is a heavy burden to carry, and I shed tears for both of my children, knowing that while they have each other, Oliver’s journey to find his own path in this world is fraught with challenges.
Despite it all, our family is filled with love and joy. I have discovered a resilience within myself that I never knew existed. Many nights, my husband finds me engrossed in research, searching for new doctors or therapies, formulating a plan to help our children. On tougher days, he may find me on the bathroom floor, overwhelmed with grief and hopelessness, feeling the weight of Oliver’s silent struggle. But each new day, I rise, wash my face, and embrace my children tightly, showering them with affection until their giggles fill the room. I remind myself that I am a fighter and that I will find a way.
I draw strength from my incredible circle of friends who support our family and know just when to lighten my spirits with laughter or offer a comforting drink. My husband is one of the most affable individuals I know, a trait Oliver seems to have inherited. Oliver’s infectious grin and love for babies show his gentle nature. I also cherish my neighbor, Tara, who shares her own son, Max, with me. Max is a verbal whirlwind, chattering away in complete sentences, and his friendship with Oliver is a beautiful sight. They play together, sharing their toys and experiences, with Max often acting as a guide, narrating their adventures while Oliver listens and giggles in delight. I hope their bond lasts a lifetime; it warms my heart to see Max enrich Oliver’s life.
In other ways, I excel at motherhood. I navigate breastfeeding like a pro, cook all the meals with joy, and have experience managing two children seamlessly. I adore children, love reading, and have taught many to read. My background as a teacher and tutor has equipped me with skills that I believe are essential for guiding Oliver. My father once told me that I was destined to be a mom, and I always believed that. Now that I am a mother, particularly to Oliver, I realize that every experience in my life has prepared me for this journey. No matter the hurdles ahead, I am committed to finding the best solutions for my son.
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In summary, while my journey as a mother to Oliver, who faces the challenges of Childhood Apraxia of Speech, is filled with uncertainties and heartache, it is also enriched with love, resilience, and hope. I am dedicated to advocating for him, ensuring he has every opportunity to thrive.