Dear Friends,
As a parent of a child with autism, my life is shaped by my son’s needs and challenges. I want you to know that while I may not have autism myself, its influence permeates every decision I make, every event I plan, and even every item I choose to buy. Please understand that I often find it difficult to truly relax or feel at ease.
I recognize I may come off as a distant friend. I tend to focus so intently on the autism-related issues in our lives that I sometimes forget to check in on you and your own experiences. You might think I’m being aloof, but I assure you, my loyalty runs deep. If you accept both my son and me, you’ll find it hard to shake us off. Just know that I can get stuck in a cycle of worry about my child, and while I care about you, my attention is often diverted by the fires I’m trying to put out.
Financial stress is another reality I navigate. Autism care can be extraordinarily expensive. I completely empathize with parents stressed about costs for recreational activities, but I’m often preoccupied with how to afford ongoing speech therapy sessions. Our insurance seems to think a limited number of visits will solve our communication hurdles, which adds to my guilt and confusion as I weigh the best treatment options against what we can realistically pay for.
Creating solutions for my son has become second nature to me because the world isn’t always accommodating to his unique needs. If you offer to help, I might turn you down initially. It’s not from a lack of trust; it’s just that I’m accustomed to handling everything myself. Explaining our routines and choices can be exhausting, especially when I’m already drained. Finding a babysitter who understands how to care for a child with autism feels like searching for a unicorn.
My marriage has also faced challenges. Although I am fortunate to be with a supportive partner, the journey hasn’t been what we envisioned. Sleep deprivation is a constant battle, and the stresses of parenting can turn minor issues into major conflicts. Sometimes, I forget that my husband is not just a co-parent but my partner in life. Our focus is often solely on our child’s needs, leaving us to operate on autopilot.
Taking my son out requires meticulous planning. We don’t have the luxury of spontaneous outings. Each day is scheduled down to the smallest detail, which can help reduce his anxiety, but it can also feel quite restrictive. Invitations to casual gatherings often lead to disappointment because our plans are set in stone.
I also want to share that social media can be a double-edged sword. A simple scroll can trigger a wave of emotions when I see friends celebrating milestones with their neurotypical kids—moments I wonder if my son will ever experience. The first time he visited Santa didn’t happen until he was ten, and I still hold my breath at the thought of future milestones like school dances. I’ve learned to protect my heart, but I still hold onto hope.
I’m not looking for pity; I simply seek your empathy. I may seem like a scattered parent navigating life’s hurdles, but I can be a lot of fun if you’re patient with me. Autism is a constant presence in our lives, even when my son isn’t around.
Thank you for understanding where I’m coming from.
Warmly,
Samantha
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Summary:
This heartfelt letter from a mother of a child with autism expresses the myriad ways autism influences her life, from financial stress to the challenges of maintaining friendships and managing family dynamics. She seeks empathy rather than pity and emphasizes the importance of understanding the experience of raising a child with unique needs.