As the mother of a child with autism, I want to share my reality. While I am not the one on the spectrum, autism profoundly influences every decision I make—from the activities we choose to the purchases I consider. Please recognize that as I navigate this journey, my thoughts are often consumed, leaving little room for rest or solitude.
I know I may not always be the friend you expect. Autism has a way of narrowing my focus, and I frequently have to remind myself to check in on you and your life. You might think I seem distant or uninterested, but I promise you that my loyalty runs deep. If you embrace both me and my son, I will be a steadfast presence in your life. Just know that my worries for my child can sometimes overshadow my awareness of your struggles.
Financial stress is another reality I face. Autism care comes with a hefty price tag. While I understand the expenses associated with recreational sports, I am grappling with how to afford ongoing speech therapy after our insurance deems my son’s needs satisfied after only a handful of sessions. This financial burden is often accompanied by guilt about making the right choices for his therapy while staying within our budget.
I have become adept at creating solutions for my son’s needs because the world often isn’t designed for him. When offered help, I may decline multiple times before accepting. It’s not that I don’t trust you; rather, I’m so accustomed to managing everything myself that it’s hard to let go. The thought of explaining our routines and choices can be exhausting, and finding babysitters who can care for a child with autism is akin to searching for unicorns.
My marriage has also faced challenges. Despite being married to a supportive partner, we find ourselves on a path we never envisioned. Sleep deprivation is a constant companion, and the overwhelming demands of parenting can turn small irritations into major conflicts. It’s easy to forget that my husband is my partner and not just a co-parent, especially when our focus is primarily on our son’s needs.
Every outing with my son requires meticulous planning, resembling a military operation. Spontaneity is a luxury we cannot afford. While a well-structured day can ease my son’s anxiety, it can also feel restrictive. Casual lunch plans or last-minute invitations often clash with our prearranged schedule, and I know this can be frustrating for friends.
Even the simplest interactions, like browsing social media, can trigger a wave of emotion. I may find myself in tears over a friend’s post about their neurotypical child achieving milestones that my son may never experience. The realization that my son missed out on typical childhood activities, like sitting on Santa’s lap until he was ten, weighs heavily on my heart. As I see peers his age navigating middle school, I remain hopeful yet guarded.
What I seek is not your pity but your empathy. I may appear to be a scatterbrained, overprotective parent, but I assure you, I can be enjoyable company if you’re patient with me. Autism is an ever-present factor in my life, whether my son is with me or not.
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In summary, I hope you can appreciate the complexities of my life as a parent to a child with autism. Your understanding and empathy can make a world of difference.