Becoming a parent comes with dreams and aspirations for how life will unfold. When Max came into my life, I envisioned countless milestones we’d share—his first word, the moment he waved goodbye, the first time he expressed his love in a soft, tender voice. I eagerly anticipated the laughter, the stories, and the deepening bond we would cultivate.
However, as I reflect back, I find I can’t recount those typical firsts. Instead, I remember the unexpected milestones—moments that were far from what I ever imagined when I held him for the first time. The first time I realized he no longer responded to his name; the day I caught him captivated by the water flowing from the faucet for nearly an hour; that shocking morning when I discovered he had creatively redecorated his room with diaper contents. There was a night of utter desperation before his diagnosis when I was so overwhelmed that I shouted, “What is wrong with you?” only to later beg for forgiveness. I can share countless instances of feeling like a failure, replaying those moments in my mind, wishing I had acted differently or shown more patience.
The journey with Max has taken many twists and turns—far from what I initially envisioned. In California, there was a program called Life Skills that filled me with dread when Max was first diagnosed. The idea of him participating in a class focused on simple tasks like folding laundry or preparing basic meals felt like a defeat. I was convinced he had greater potential, that he could meet academic standards, and thrive alongside his peers. It terrified me to think that such a program would mean I had stopped fighting for him, stopped believing in his abilities.
However, over the years, my perspective began to shift. I realized that the goals I set were often my own desires rather than an accurate reflection of who Max truly is. I learned that it wasn’t the educators who were failing; it was me who needed to listen and adjust my expectations. I had to let go of my preconceived notions of what a fulfilling life looked like for him—and recognize that success could mean different things.
Unconditional acceptance of our children, regardless of their paths, is a concept we often talk about but find difficult to practice. I frequently tell others that my greatest wish for my children is that they become kind and contributing members of society. But what if that isn’t possible? What if they struggle to connect with others, can’t engage in conversation, or express affection? What if they can never reciprocate love? This raises tough questions about how we define a fulfilling life and whether we can embrace our children without conditions, regardless of their abilities.
Now, after nearly eleven years on this journey, I find joy in the simple moments. Max has taken on a role at school where he delivers milk to younger students, an activity that fills him with happiness. He shares these experiences with me excitedly when he comes home. This was something I once thought I might struggle to accept. Yet, I’ve come to appreciate each step we take together, understanding that his success isn’t confined to the limitations of an IEP; it’s about finding joy in the present.
Even after all this time, I still grapple with finding balance. I watch my neurotypical children and sometimes feel the urge to push them harder, yet I also know the importance of allowing them to forge their own paths. Max has taught me that self-worth isn’t tied to meeting societal expectations. Each life holds meaning and value beyond skills or achievements.
I often observe how others react to Max, and it saddens me when they overlook him or show impatience in moments of frustration. It raises the question of why he seems less deserving of kindness simply because he doesn’t fit societal norms. I am grateful for the lessons I’ve learned through Max, for the courage and unconditional love he has shown me, and for the reminder that we should celebrate our differences instead of attempting to change them.
As we continue this journey, I am committed to advocating for a world that not only accepts individuals like Max but celebrates their uniqueness. A world where we prioritize basic kindness and decency, fostering an environment where every person has a place, regardless of their abilities.
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In summary, my journey with Max has taught me invaluable lessons about acceptance, love, and the importance of redefining success. The moments that bring him joy are what matter most, and I am grateful for the growth we’ve experienced together.