Tangled Up In Blue: Stuck In Autism Every Month

 

Autism Every Month

Welcome to April – Autism Awareness Month. The month when everyone lights it up blue to celebrate a disorder that can be debilitating for so many. And every year it feels like I’m screaming the same thing. Screaming that even though we celebrate our children, autism is nothing to celebrate. That the blue lights do nothing to actually help families struggling with autism. And that unless you are living it, the realities of autism are probably not what you think.

Our Kids Are Ignored

But it feels like nothing changes. Like the movie Groundhog Day, every day is April in Autism World. We are stuck in autism every month, sans the blue lights and fanfare. And autism rates continue to skyrocket. Resources are scarce, especially as children get older. Funding is being cut. Parents are exhausted and broke and stressed, and have to live forever. Happy April.

I feel like I’ve been trying to focus on these autism life realities, and maybe some people get it and maybe some don’t. And maybe some don’t care – they aren’t living it so they just want to not look it in the eye and pass by quickly like they would a homeless person on the street (also not cool, of course).

Our Kids Are Human 

So, in that vein, this year I’ll be focusing more on the humanity aspect of autism. Because, like the homeless, those with autism want to be acknowledged. To be seen as human. Our children with autism are people – people who have thoughts and feelings.  And they deserve love, respect, and kindness. They deserve so much more than a blue light.

When my son Christopher was first diagnosed, I was terrified and devastated. He had regressed from a happy, funny toddler who loved to sing and blow kisses into a spaced out, miserable child with an awful scream who refused to eat or sleep and could not be comforted. I waited and prayed for him to “snap out of it” and go back to being his usual self. I desperately looked for a sign that the baby I knew was still in there. I’m still waiting, working, and trying everything I can to get him back. Not to change him – to get him back. The child I know is in there. Somewhere.

Stories Of Hope

Those were the stories I needed to hear when we first got the autism diagnosis. I binge read hope and recovery stories. Accounts from parents who got their kids back. About kids who felt better – healthier, happier, able to communicate. And kids who showed signs that they were still in there. Not lost forever in the fog of autism.

Those are the stories I’ll be featuring this month. Stories that illustrate that our kids are so much more than the symptoms of autism. Stories about real families, celebrating small victories and sometimes amazing breakthroughs. Autism families face so many struggles, and those realities are important. But so is hope.

Our Kids Are In There

Behind the eyes of the child who can’t speak, who is raging, who is eloping, who is scripting, who is seizing, who is spinning, who is stimming, who is lining up toys, who is hanging from the ceiling fan, who is smearing poop on the wall, who is eating non-food items, who is walking on his toes, who is banging her head against the wall … is a person. A person who is thinking and listening and learning and FEELING.

Our kids are in there. Some of them are buried deeper than others, but they are in there. Show them love. Show them respect. Show them kindness. In April, and every month.