At just nine months old, I sensed that my son, Liam, was not developing in the same way as other children. By 17 months, I took the initiative to enroll him in feeding therapy, followed closely by early intervention services. During those early days, everyone around me would say things like, “He’s just fine” or “Boys typically take longer to reach certain milestones.” As a healthcare professional, I recognized the signs and, as a mother, I felt it deep within my heart.
Liam will turn four this April, marking my fourth year as a mom. My experience with autism, however, is much more recent; he was diagnosed shortly after his second birthday. Though I’m not an expert in the realm of special needs parenting, I’ve learned valuable lessons along the way.
Our family’s journey is built upon four foundational pillars that guide us as we grow, learn, and love together:
1. Take a Deep Breath
It’s amusing how often we hear the advice to breathe. During childbirth, we’re reminded to breathe, waiting eagerly to hear our newborn’s first breath. Then comes the moment when you receive your child’s autism diagnosis. Breathe. Let the tears flow. Breathe again. Allow yourself to grieve in whatever way feels right. Grieving is an ongoing part of this journey, and at times, it still overwhelms me.
We have a neurotypical three-year-old daughter as well, and watching her effortlessly reach milestones can be bittersweet. I often find it challenging to celebrate those moments with her because I’m still grieving the hurdles Liam faces. It’s not that we’re living a sad life; it’s simply the reality that his path is more challenging. In those moments, I remind myself to breathe.
2. Autism is Harder for Him Than It is for Me
Liam is non-verbal and struggles to express his needs. It’s frustrating for me as his mother to guess what he’s trying to communicate. Reflecting on this makes me ashamed to feel upset. I can’t imagine the level of frustration he experiences when he can’t convey his feelings or needs. The meltdowns, which can test my patience, are not about me; they’re a manifestation of his struggles with being overtired, overstimulated, and unable to communicate.
Liam has autism. I do not.
3. Embrace the Journey as a Process
Every aspect of this journey takes time. From getting your child evaluated to navigating waitlists and finally receiving services, it’s all a process. Watching your child learn and grow is also a process. A fellow mother recently sought my advice regarding feeding therapy. I proudly shared that Liam graduated from feeding therapy after two long years. Initially, he wouldn’t progress beyond stage 1 baby food and developed behavioral issues, even gagging at the sight of food. Today, he can enjoy pizza and cake at birthday parties, and my heart swells with joy when I see him at the dinner table with us. Remember, we didn’t achieve this without going through a long process.
4. Cherish Your Role as a Parent
Sometimes, parenting feels like a wild ride through a chaotic tunnel, akin to the scene in Willy Wonka’s chocolate factory, where everything is flashing and overwhelming. I navigate this tunnel of autism filled with thoughts about ABA therapy, speech therapy, occupational therapy, dietary considerations, and more. In these moments, I find myself forgetting to simply be present as a parent.
Yet, I treasure the moments when Liam and his sister play and laugh together. I refuse to miss out on those precious experiences because I’m preoccupied with appointments or evaluations. My day ends where it all began—breathing. I listen to Liam’s gentle breaths as he sleeps. In those quiet moments, I reflect on what he might dream about.
For those on a similar journey, I encourage you to explore resources like Mayo Clinic’s guide for further understanding. And if you’re interested in family planning, consider checking out our blog post on couples’ fertility journeys. To gain more insights, you can also visit this authority on special needs.
Summary
Raising a child with special needs can be a challenging yet rewarding journey. It’s essential to breathe, recognize that the struggles can be harder for them, embrace the process, and cherish every moment spent as a parent. Through understanding and perseverance, we can navigate this path together.