In an ever-evolving world, the prevalence of autism diagnoses continues to rise. While some may question the validity of these diagnoses, there’s no denying the unique and incredible individuals they represent. This journey, with its ups and downs, often reminds me of the opening lines of Edgar Allan Poe’s iconic poem:
“Once upon a midnight dreary, while I pondered, weak and weary, Over many a quaint and curious volume of forgotten lore— While I nodded, nearly napping, suddenly there came a tapping, As of some one gently rapping, rapping at my chamber door. “‘Tis some visitor,” I muttered, “tapping at my chamber door— Only this and nothing more.”
These lines resonate with me, not for their eerie ambiance but for the way they encapsulate life with my “mini-me,” my third son. One morning, he woke us up unusually early, declaring, “I think I’m sick.” As he stood by my wife’s nightstand, gulping down water, I groggily asked, “What makes you say that?” It was evident this was going to be an early morning.
Navigating the world of autistic children often means setting aside societal norms. While some may find being woken up in the middle of the night an annoyance, as parents of special needs children, we understand that our role is to be there for them. We’re here to provide guidance, support, and explanations of how life works, even if it doesn’t always align with their unique perspectives.
Consider my second son, high-functioning and outwardly appearing typical. Yet, once he speaks, his unique mannerisms and black-and-white thinking become apparent. For him, rules are absolute. He recently asked, “Dad, if you hadn’t married mom, where would I be?” I responded, “You might have been part of another family, but you wouldn’t even know about us.” His thought process led to an interesting revelation: “If I wasn’t autistic in that family, would they have made me play sports?” His dislike for sports is clear. He just doesn’t see the point in chasing a ball across a field or court, which stands in stark contrast to my childhood love of sports.
The contrast between my second and third sons is striking. While the second prefers a more controlled and structured environment, the third thrives on running around, unable to sit still. Each child’s uniqueness challenges us to adapt, understand, and accept their differences.
Our life as a family might not align with what we once envisioned. My wife humorously shares how she initially pictured herself as the PTA mom, shuttling kids to sports games, plays, recitals, and organizing bake sales and school fundraisers. “You can still do that,” I say, to which she often responds, “Yeah, when would I sleep?”
Are we disappointed with where life has taken us? No. Are we sad because it hasn’t followed the exact path we imagined? Not at all.
Many colleagues and friends have marveled at the challenges we face, often saying, “I couldn’t handle what you deal with.” To that, I reply, “Yes, you could. You adapt and realize that your stressors are not as important as what your kids are going through. It just takes some adjustments.”
This doesn’t mean that our children take precedence over everything, but it does mean we must be aware of their needs and make the necessary adjustments in our lives. Will others always understand? Not necessarily. Will your job sometimes be challenging? Most likely. Can it be mitigated? Absolutely. It requires education—educating those around you on how to handle meltdowns, outbursts, and the quirks that may come with autism. The more everyone knows about autism and how to navigate its challenges, the better off you’ll be.
This website and blog exist primarily to educate and provide resources. It’s a platform to let others know they’re not alone, that help is available, and that understanding and support can transform the autism journey into a remarkable and rewarding adventure.