Monday, April 1, 2019
Ah..here we go again. April. Autism awareness month. After doing this for years I have mixed feelings about this. I wrote a blog post in 2014 called Autism action month. It was more a “do something besides wear blue and post on Facebook. I still feel that way. We have to do more. Our schools are still battling seclusion and restraint. We still have to pay attorneys to take guardianship of our children even if they cannot speak. We still face cut after cut for funding for Medicaid, school programs, vocational support, housing. And I’m tired. I’m tired of having to turn on “Advocate mom mode” before every meeting, every doctors appointment. I would be lying if I said sometimes the “feel good rainbow support mom” didn’t have an ugly evil twin sister who wants nothing more than Betsy Devos to fall in a black abyss. But we also forget during this month when we are so busy advocating to celebrate. Celebrating successes. I don’t mean the inspiration porn. My son won’t make the basketball team, he’s not a savant. But what he is...is amazing. He’s smart. His sensory system is not “off”. It’s different than yours and mine. He can tell if he can trust you immediately. He can hear sounds that I can’t pick up on. Smells and sounds and lights, taste and textures. They can assault his system but he also gets to delight in them. Way more than I do. The sheer joy of rainfall, vibrant colors, flavor explosions, emotions so strong they are tangible. He gets to experience the world in an intense way and sometimes that’s so incredible I envy him. He lives by his time table, his terms, and how many of us get to say that? At times he is pure joy and love. He reminds me every day that he’s stronger than me. And I don’t mean because he can put me in a WWE move faster than you can blink. I mean because he constantly has to deal with a world that wasn’t built for him. And he still seems to persevere and impress everyone with how far he comes. He’s a great swimmer, he is a speed demon on his bike, he has perfect balance, he lives for peanut butter waffles, he thinks his big brother is the coolest and he is the kindest soul you will meet on this earth. I am so proud of you Chan man. You make my life so worth living and learning. Your lessons have given me a wealth of knowledge that most people don’t get in this lifetime. So while we all see the Autism awareness month ribbons, colors, articles, and posts, just remember that it’s bigger than that. Us parents do this all year, every year. And we get to celebrate the coolest milestones and we get a glimpse into a different part of humanity. Like some weird secret society that you are only part of if you live it. I don’t regret the puzzle piece tattoo I got years ago. I don’t view that symbol as my son “missing” something. I always saw it as my inability to understand, not his. My next tattoo will be directly across from that one. And it will say “define normal”. Because while we are so busy pointing out the “awareness and advocacy” part, sometimes we put the acceptance part on the back burner. Whatever step you are on in this journey, just remember we are all in this together. Don’t tear each other apart with comments and arguments. Leave the path a little easier for those behind you. Not just the families. Our neighbors, our business owners, our schools, and our legislators. Maybe then one day we won’t need to highlight a month as a reminder. Instead we can focus on celebrating the differences and what they bring to all of us.