Raising a child with special needs is a unique journey filled with challenges and rewards. For me, this journey began when I noticed something was different about my son, Ethan, at just nine months old. By 17 months, I took the initiative to enroll him in feeding therapy and sought early intervention services. Despite the reassurances from others, like “He’s just a boy; they take longer,” my instincts, both as a nurse and a mother, told me otherwise.
Ethan will turn four this April, marking not only his milestones but also my growth as a parent. His diagnosis of autism came shortly after his second birthday, and while I’m not an expert in the realm of special needs, I have gained valuable insights along the way.
Our Family’s Four Foundational Pillars
Our family thrives on four foundational pillars that guide us through this journey:
- Breathe
You often hear the importance of breathing—especially during labor when anticipating your child’s first breath. Then comes the moment when you learn of your child’s autism diagnosis. At that point, it’s essential to take a moment to breathe, cry, and process your emotions. Grieving is a natural part of this path, and it’s okay to feel that way. There are still days when I find myself grappling with feelings of sadness as I witness my neurotypical child hitting milestones effortlessly, while my heart aches for Ethan, who faces a different set of challenges. In those moments, I remind myself to breathe. - Autism’s Impact
While I experience difficulty navigating Ethan’s needs, I must remind myself that it’s even harder for him. As a non-verbal child, he struggles to communicate his needs, which can lead to frustrating moments for both of us. In those times of exasperation, I must remember that I am not the one grappling with sensory overload or the inability to express feelings. Ethan is the one living through those challenges, and it’s crucial to empathize with his experience. - Embrace the Process
The journey of raising a child with special needs is filled with processes—from evaluations to receiving support services. It’s vital to embrace this journey and understand that progress takes time. For instance, when a fellow parent sought advice about feeding therapy, I shared that Ethan spent nearly two years in therapy before he could eat a variety of foods. Initially, he struggled even with baby food due to behavioral challenges, but today, he can enjoy pizza and cake at birthday parties with his peers. This progress wouldn’t have been possible without patience and dedication to the process. - Savor Parenting Moments
At times, it feels like navigating through a dark tunnel, akin to the experience of Willy Wonka’s chocolate factory ride—overwhelming and somewhat frightening. In this tunnel, various aspects of autism treatment, such as ABA therapy, speech therapy, and dietary considerations, flash before me, making it easy to lose sight of simply enjoying parenthood. Yet, I cherish the moments when my children play and laugh together, and I strive to remain present in those instances instead of being consumed by appointments and evaluations.
At the end of each day, I take a moment to breathe again, listening to Ethan’s gentle breath as he sleeps. I reflect on his dreams and the love that surrounds us.
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Summary
Parenting a child with special needs is a multifaceted experience shaped by love, patience, and ongoing processes. Through understanding the challenges faced by my child, embracing the journey, and cherishing joyful moments, I am learning to navigate this path with grace.