I’m gonna be honest. Okay, I usually am, but maybe the better word is transparent. Autism is messy. Autism is different every day, and many times it is different every minute of every day. Today after church, our youngest daughter couldn’t hold it together any longer. Whatever it was that she was feeling, whatever it was that sent her over the edge (ie the last straw), I’m not sure, and it doesn’t really matter. She’s processed, coped and moved on. Our community of faith got to see what a meltdown looks like for our 10-year-old daughter who happens to have autism, ADHD, and generalized anxiety disorder. The meltdowns are few compared to the number many parents of children on the spectrum face. But the irony was not lost on myself or my husband as today is Worldwide Autism Awareness Day.
We typically settle into a quiet, creative afternoon on Sundays. We rest. We reconnect with each other after going to school, work, and doing chores the rest of the week. I’m sure, like many of you, I settled in to browse the many social media outlets programmed on my phone. I light it up blue (Autism Speaks awareness campaign). I don my puzzle pieces at home and at work. Our family is fully aware of the many controversies and debates surrounding autism, “treatments”, its support groups, and the different causes.
But, I don’t really think twice about lighting it up blue, so some of the things in my social media feeds coming across today were shocking. I appreciate another’s perspective on things, but do we really need more causes/opinions to offend us and divide us, though? Aren’t we missing the bigger picture?
Our family has lived hidden in many ways. We have protected our daughters from the judgement, the eyes, and the need to conform to certain societal institutions. It’s affected our marriage. We’ve never had a consistent date night. A date night for us is maybe grabbing five or ten minutes early in the morning while the coffee pot percolates or hanging out by the washer and dryer as we do laundry. Finding a sitter is hard. Trusting the sitter is even harder. So for twelve years, we’ve lived hidden. We’ve lived shortened. You arrive on time to events, but leave early. When your daughter is 10, you’re still carrying a “diaper bag” with a weighted blanket, fidgets, snacks, essential oils, and lotions. And don’t forget your alternative method of communication, because even if your child speaks, there are always moments when they need another way to communicate.
Yes I’ll wear blue (for autism and my KC Royals), because I support the autism community and want you to ask questions. Yes, I changed my light bulbs outside to blue and hope it ignites an open dialogue with my neighbors about the realities of autism, being a parent, and a special education teacher.
So why #lightitupblue and have an #autismawareness day?
“…no matter how your molecules are knit together in the spectrum of quiet to loud, bold to subversive, and so on, you’re commissioned and permissioned to arrive at life as your own weird and wonderful self,” Erika Morrison, Bandersnatch.
Because it’s about 3 things.
- Be aware. Not just for autism, but for the differences we all possess.
- Educate yourself. After awareness, we can start to educate ourselves and our community
- Accept. We all want to be accepted by someone. Eventually, I hope, we accept each other for our differences and similarities, then we will be able to create a community of support and love.
Because at the end of it all, I want to be known as someone who loved well.
My youngest blue light.