As a mother of a child with autism, my journey began when my son was diagnosed at the age of two. By the time we received the news, I had already sensed that something was different. There was no denial; instead, we gradually accepted the signs through regular checkups and assessments. I dreaded those ASQ questionnaires, but they were part of our reality, alongside a pediatrician who recognized the symptoms early on.
Reflecting on those early days, I remember noticing signs such as his lack of eye contact. As an infant, he would often gaze past me, focusing instead on objects like the ceiling fan or pictures on the wall. While I noted these behaviors, I didn’t feel overly alarmed at the time.
However, by six months, we encountered a significant hurdle: my son developed a strong aversion to food. We tried every trick in the book—different types of food, playful distractions, and even creative meal settings. We avoided force-feeding, but making him touch food was a monumental challenge. The tears and frustration felt overwhelming. With an estimated 5% success rate in feeding him, I felt like a failure; toddlers should naturally want to eat, right?
The mental toll was immense. Eventually, I reached a turning point where I had to accept the situation. I stopped losing my temper during mealtimes and let go of my expectations of “normal.” This shift allowed me to focus on being a more present mother.
At his 12-month checkup, the ASQ questionnaire hit hard. Questions about his ability to imitate sounds and follow simple commands highlighted the discrepancies in his development. The pediatrician suggested “possible autism,” and I broke down. It was a terrifying realization, but we quickly began exploring early intervention options in our area, which included monthly visits from a speech therapist and an occupational therapist.
Finding additional therapy proved to be a challenge, as local options were limited and often had long waiting lists. Eventually, I discovered a clinic an hour away, and we committed to weekly visits for occupational therapy.
Just a week after my son’s second birthday, we received the official autism diagnosis. Rather than feeling ashamed, I felt empowered with clarity and resources to help my son. I dove into learning about autism spectrum disorder (ASD), reading books and manuals—even if sometimes I questioned my sanity in doing so. I sought community support, but the few groups I found were disappointing.
Social media support groups were often battlegrounds rather than safe havens. I craved positivity and understanding but encountered negativity that drained my spirit. Despite this, I gained valuable insights into the diverse experiences of children on the spectrum and realized I wasn’t alone.
As time passed, outings became increasingly stressful. I had to patiently explain to well-meaning individuals that my son wasn’t ignoring them; he could hear perfectly well. Maintaining a smile while absorbing unsolicited advice was exhausting. Yet, I appreciated those who genuinely listened and tried to understand.
I learned that many people have a limited understanding of autism, often thinking they grasp it after meeting just one child on the spectrum. Autism is vast and cannot be easily defined. It requires lived experience to truly understand.
At first glance, my son seems like any other toddler—smiling, affectionate, and full of energy. He loves trains, cars, and the outdoors. However, enter autism: he loves to spin objects, and while he has only one word—“bye”—he communicates in his unique way. His sleep patterns have been erratic, and he wakes up smiling every day, despite the challenges we face.
The feeding difficulties, however, represent a darker side of our journey. Our cabinet is filled with sippy cups, most of which he finds intolerable. His diet consists mainly of cheese puffs and yogurt melts, and we rely on toddler formula for nutrition. After nearly two years of occupational therapy focused on feeding, we’ve made slow progress, but I still worry about his future.
Autism affects every aspect of life. While my experiences might seem mild compared to others, the struggles are real. Many mothers face heartbreaking situations, some unable to calm their children. We all fight for the services our children need, battling for access, affordability, and often facing denial from others.
Ultimately, we fight for our children because they are our hearts and our light. We persevere, never losing hope and always striving for their success.
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In summary, navigating the complexities of autism is a journey filled with both challenges and triumphs. By embracing each moment and advocating for our children, we can foster a brighter future for them.