I could lay out all kinds of reasons/excuses – we moved last year and I don’t know where the bulbs are. I was busy doing other things (like job hunting). And here’s one that actually counts for something – I wrote an ebook for autism parents (or anyone who wants to know what it’s like). That was my personal contribution for Autism Awareness/Acceptance Month, in addition to blogging, attending two meetings, and a day-long seminar this Friday about autism and mental health dual diagnoses, which I think will be game-changing.
But here’s the real reason why I didn’t light it up blue this year: my son. Nigel is a living, breathing, walking blue light. He is not indistinguishable from his peers. People learn about autism just by observing him doing what he does best – being himself. Nodding or bowing when he greets people because he prefers that to shaking hands. Speaking in his often slow, halting, word-searching gait. Or rattling off a line from a movie (because he doesn’t have to search for those words). Wearing his trademark chullo hat from Peru every day for over two years (even in the summer), which he readily tells people is a tribute to his grandfather who gave it to him, and while that’s true, it isn’t a coincidence that the hat conforms to his head and snugly covers his ears, effectively muffling sound. Together with his self-described “monotone” voice, he is his authentic self, moving through life, lighting it up blue – every place, every room, every person he encounters, every word he manages to utter.
I know this because of our neighbors. The lady who lives downstairs from us in our apartment complex is very social and is often outside with her two young children. As we walked by her a few weeks ago while going to the car, she said hello to Nigel as he quickly strode past. Nigel, in typical fashion, nodded in her direction as he continued to walk and made a beeline for the car. I stopped briefly and said to her, “I’m sorry; he has difficulty with greetings,” to which she smiled and said, “That’s okay, I have a nephew just like him.” And I smiled and continued to the car. That’s not just autism awareness – that’s autism acceptance. I started to get misty-eyed, because I’ve worked for this for so long, back to the early years when I’d tell parents at the playground that he had autism as a way to explain his behavior and lack of speech and they’d ask, “What’s that?”
But then, from somewhere in my body, a laugh broke out. And I think it was for the exact same reason that I got misty-eyed – because she completely accepted his different behavior. This is what we’ve worked for, fought for, dreamed for. Not everyone is there yet, but so many more are. It feels good to witness that.
And a week later, as Nigel came up the front stairs, home from school, I heard his low voice and wasn’t sure if he was reciting a scene from a movie or actually talking with someone. I asked him when he came in, and he told me he was talking with the girl who lived in the apartment next door, who happens to go to his school. “She’s nice,” he said. “She understands about my difference.”
And while there are those who are aware that he’s different and try to use that to their advantage, there are still far more who understand, who care, and who accept. No blue lights necessary.
Ironically, while looking for something else, Nigel found them yesterday, up in a box in a closet. I reminded him what they were for and asked if he thought we should have put them up. The verdict, straight from the mouth of someone who didn’t start talking until age five and a half, delivered in his trademark “monotone” voice: “I really don’t see the point.”
And so, as always, I follow his lead.