When my son, Caleb, received his Autism Spectrum Disorder (ASD) diagnosis just two weeks after turning three, I was caught off guard. Apart from some speech delays and minimal eye contact, he didn’t exhibit many behaviors typically associated with autism. Those early days felt like a blissful honeymoon, but it didn’t take long for reality to set in.
Once we became aware of what to look for, Caleb’s behaviors began to change. His frustration with limited communication became evident. He struggled with sensory issues that disrupted his daily activities, and his eating habits transformed overnight. In moments of distress, he sometimes expressed his frustration physically, which was heart-wrenching for me as his mother.
I’ve endured plenty of bruises and scratches, remnants of Caleb’s attempts to communicate his feelings. At one appointment, a doctor even questioned whether I was a victim of domestic abuse because of the marks on my arms. I had to explain that they came from my little boy, not my partner. That day left me in tears, not out of self-pity, but from the pain of knowing my son was battling an internal struggle that I couldn’t fully comprehend.
When we venture out, and I see Caleb getting agitated, it’s not just his behavior that troubles me; it’s the judgmental looks from strangers. Their expressions seem to say, “If my child ever acted like that…” I wish they could understand that Caleb’s actions come from a deep desire to express himself. “Using his words” is a luxury he doesn’t have right now.
It’s crucial to understand that the behaviors associated with autism aren’t mere tantrums. We need to look deeper to identify what triggers these reactions. This is no easy task, and the challenges are real.
While autism has its beautiful moments, it also comes with significant hurdles. I don’t buy into the idea that autism is a superpower; that notion often overlooks the genuine obstacles faced daily. Caleb’s frustration mounts as he tries to communicate but often feels unheard.
I’ve experimented with various methods to help Caleb express himself, from pictures and sign language to trying out different comforting items. I often find myself racing back to the kitchen multiple times to figure out what he wants for breakfast. And if you think the phrase “You get what you get, and you don’t throw a fit” works in our case, think again!
Of course, I’ve consulted with pediatricians and therapists to find effective strategies. It turns out Caleb is a sensory seeker, and we’ve learned that specific inputs can help him feel more grounded. When he becomes physical, we redirect him to safer alternatives, like clapping or tapping his fingers. We even use a compression vest during challenging moments and have fitted him for a safety helmet to prevent injury during meltdowns.
I’ve delved into numerous resources, including books and insights from autistic adults, but there are days when I feel like I’m falling short. The reality of Caleb’s struggles with self-harm and frustration during meltdowns is one of the toughest parts of my journey as a mom. I know these behaviors are common among nonverbal children with autism, yet it still breaks my heart.
I don’t have all the answers, and there’s no quick fix for the frustrations stemming from years of misunderstanding. However, I’ve learned so much more about autism since Caleb’s diagnosis, and that’s a step in the right direction. As I strive to connect with my son, I remind myself that he is also trying. Together, we will carve out our communication path—words or no words.
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In summary, parenting a child with autism can be challenging, with unique struggles that often go unseen. However, with patience, understanding, and the right resources, there is hope for improved communication and connection.
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