You become a parent, and you have ideas and expectations of how life will be. When Luca was born, I imagined all the firsts we would have together — his first word, the first time he waved goodbye, his first favorite game, the first time he would say, “I love you” in a sweet, quiet baby voice. I anticipated moments we would share, stories he would tell me, funny things he would say. I couldn’t wait for our relationship and bond to grow.
Looking back, I can’t tell you about the first thing he said, his favorite toy, or our first game of peekaboo. I can tell you about the other firsts — firsts I never expected, that were never in the realm of possibility when he was put in my arms. The first time I noticed he had stopped responding to his name; the moment I caught him in the bathroom flicking his fingers in the faucet water for 30 minutes; the first morning I walked in to his room to find he had smeared the contents of his diaper all over his walls. The first night that I broke down, shortly before his diagnosis, when my baby cried and screamed me into such exhaustion that I picked him up and yelled at him, “What is wrong with you?,” begging him to stop, and then begging for forgiveness. I can tell you about the first time and the many times after I failed and failed and failed again, only to relive it after he had fallen asleep, trying to think what I could have done differently, or said better, or how I could have offered more patience.
This road with Luca … Luca has never been what I expected.
Back in California, there was a program called Life Skills. Early in Luca’s diagnosis, it was a terrifying thought that he would be placed in a program that taught him how to fold laundry, make a simple meal, count out change to pay for something at the store. For me, that program symbolized giving up on him, and I knew, without question, that there was more for him. I knew he could meet grade level standards, I knew he could learn to keep up with peers. I wanted more for him, I knew how smart he was and I saw the potential. And I was sure that, although unspoken, Luca wanted those things, too. The life skills curriculum scared me — it would mean that I had failed pushing him, fighting for him, expecting something different, something better.
And then, somewhere along the way, somewhere in these past 12 years, as we have grown and learned, that fear began to fade away. I started realizing that those goals that I set for him were things I wanted — not necessarily reflective of the boy that he is. It wasn’t the teachers who were failing, it wasn’t Luca who had to work harder. It was me who had to learn to stop and listen, to let go of all the expectations of what and who I thought Luca could be or would be, to stop pushing so hard — not because I didn’t think he could, but because maybe all of that didn’t define what a meaningful life, a happy life could be for him.
The idea of unconditional acceptance for your children, the unconditional acceptance of the life they choose or their path to happiness, no matter what, is an easy thing to say — it’s the “right” thing to say. And I, too, tell people all the time, the only thing that I want for my children, the most important thing that defines success, is that they are contributing members of society, that they have meaningful relationships with others, that they are kind to others, kind to the world.
But what if they can’t? What if, instead, they are completely dependent on that society? What if they can’t reciprocate kindness, if they can’t have conversations, if they can’t share interests, or they can’t be affectionate? What if they can never tell you that they love you back? What happens when that definition of success, that definition of a full and purposeful life, when expectations and dreams you have for them, however right and good they seem, may be unattainable? Can you love, can you accept, can you embrace without anything in return?
It’s been about eleven years now since the beginning of our autism journey. Sometimes it seems a lifetime away. These days, Luca delivers milk at school. Every morning, with his paraeducator, he takes a bucket, counts out the milk cartons, and delivers milk to the junior kindergarteners at snack time. He likes it, it makes him happy, he tells me about it when he gets home from school.
Doing a job like this was something I never thought I would be okay with, but I’ve come to a place where I understand and accept and allow each moment, each step on our road together to be as it is. And that doesn’t mean I am complacent, it doesn’t mean he doesn’t have academic IEP goals or social skills challenges we work on each moment we can. It means that I embrace the boy he is today, all of it, no matter what the future holds. It means I choose not to judge his day or define his success by whatever fits in that little IEP box. Seeing his happiness, watching him so enthusiastically tell me about it at the end of the day, finding his joy — it’s enough.
Even with all these years of learning, I’m not perfect. I still struggle with finding a balance. I see my neurotypical kids and know what they are capable of and when I feel like they can achieve more, be more, or when they tell me their hopes for the future, I fight with my desire to push them to do better and work harder — or to let them find their way, on their own, in their own time.
But what autism has taught me to strive for is for them to know that their life’s meaning, their worth as a person is not defined by whether or not they can meet the expectations placed on them. That their lives, each life, has purpose and value beyond what skills and abilities and talents they have, beyond what goals they set and whether or not they meet them, beyond what anyone else says or thinks of them. It has taught me the purest love, the purest acceptance. And it challenges me to extend that to those around me every day and in every situation — to love truly without conditions, to accept blindly, to show each person I meet that he is deserving of kindness no matter his abilities.
I see people every day look at Luca and quickly turn away, smile kindly to each of my other children and engage them in conversation — but act like Luca isn’t in the room. I see quick impatience when he is tired or frustrated because he can’t tell us what’s wrong, or when he can’t sit still. And I wonder how he can be seen as so unloveable, if suddenly he is unworthy of patience and kindness and compassion because he doesn’t live up to what others think a young boy should be.
In all this, I am so thankful for these lessons. I am thankful for the moments I can make my fear and anxieties and the pressures around me go silent, and I can reflect on this life I have been blessed with — to not just accept it, but to embrace it, even if it wasn’t what I expected so many years ago.
I am thankful for Luca, for my husband, for all my kids who have truly gone beyond in showing me and teaching me courage, kindness, and perfect, unconditional love. And I am thankful that I am reminded by others around me that they not only share similar journeys — they also fight for a world that not just accepts others, but that celebrates their differences instead of constantly trying to change them. A world that questions: What if we stopped judging others and defining them? What if we gave each person’s life value and worth and offered a space in our society regardless of what they could give back? How could they grow, how could they learn, what would they achieve?
Because before we talk about inclusivity, we have to become aware and accepting and comfortable enough to offer basic decency and kindness to others around us with lives and journeys unlike our own. Let’s fight for that — not just for Luca, not just for people with autism, but for those they grow up with, those who will love them and care for them and continue to advocate for them for generations to come.
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