My son’s early days seem like a blur in hindsight. He was a sweet newborn doing sweet newborn things until the expectations started.
Before we knew it, the focus was on what he was and wasn’t doing. Sitting up, rolling over, crawling, walking, talking, and more were all on the list of milestones that everyone seemingly asked about. The worst part was that they didn’t even ask to be rude. They asked because that’s the type of small talk that gets made with new parents.
It caused some uncomfortable conversations with acquaintances who had no idea the minefield they were entering. Those responses take a lot of out of a parent as they require honesty that we sometimes aren’t even giving to ourselves yet.
That mindset dominated his early years and, I’m sad to say, it felt like a lot of my time with him was spent worrying. I analyzed what he did and didn’t do. I googled a lot. It wasn’t a good thing. My little boy needed me and I didn’t feel I could help him. I wanted to “fix” whatever it was that I thought needed fixing.
As the years went by, it started to become clear that his delays weren’t an obstacle. They were a part of who he was. The issue wasn’t that he couldn’t do this or couldn’t do that. It was how autism, something I knew very little about, was a huge part of the person he was, is, and will always be.
By the time he was five, the veil had been lifted for many. A non-verbal kindergartener leaves very little room for self-delusion. I was already aware that he had autism from an early age. I had grown to accept that he had autism.
Then, in 2016, I learned to appreciate that he had autism.
It was in October of that year whem Autism Speaks held a walk at Jones Beach here on Long Island. I looked online at the families, all gathered together, smiling for the camera and celebrating their loved ones who had autism. Seeing their faces had a huge effect on me.
That’s because years earlier, when Lucas had first entered his special needs pre-school, I looked at the same faces of the same families on all the brochures and slide shows. At the time, however, I had a different visceral reaction. I wondered how they could be so happy, With all my worry and anxiety over there being “something wrong” with my son, I could never understand how these strangers were smiling as autism entered their family.
Years later, in October of 2016, I looked at those faces and I knew how. I was one of them. I was smiling for my son.
I got it. It made sense. While Lucas might need my assistance learning things and the road ahead would be full of some difficult paths, he didn’t need “fixing.” He needed love.
So, I signed him, me, and my daughter up and had shirts made for the three of us. Imitating the design from Napoleon Dynamite’s iconic tees, I had “Walk For Lucas” printed on each one. We wore them proudly and, along with friends, we headed to Jones Beach for the most special day my boy had ever had up until that point (and probably ever since too).
My neurotypical daughter, for the first time, saw others with autism and how her brother was the star that day. He wasn’t being shushed from clapping loudly during a concert or managed as he wandered away from some lame local tree lighting ceremony. This was his event and, as he sat in his little red wagon, he watched the beach while we wheeled him around the course.
That day changed everything for the three of us. Less than six months later, I started writing this blog. I shared my son with the world.
Life is full of before and after moments and that walk was an example of that. Letting Lucas have a chance to be in the spotlight that day felt great. It’s why I strive to make him, along with his sister, the stars of all my days. Neither one of them need to be managed. They just need love and support. All kids do.
Although we are now living in the “after”, I am keenly aware of what “before” felt like. I know there are people reading this who are still struggling with that time in their own lives. The haze that I wandered through in those early years can be maddening.
There’s nothing to be ashamed of, though, as it just means your care about your child. There’s a fear of not being able to guide your child down the upcoming path. It’s all based on the unknown, which is a good thing.
It’s a good thing because that means that it ends. Over time, as you learn and experience life, the unknown fades away. The sky lights up and you can see the path more clearly than you thought you ever could. When that day comes and the road doesn’t seem as foggy, you’ll be ready and you can do what we did when happened for us. Walk for Lucas.
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